Yesterday was World Mental Health Day. To commemorate it, I thought I'd talk a bit about how I got the support I needed, why I'm so glad I did take that step and to speak a bit about attitudes towards mental illness even today.
I've probably had symptoms of Depression and Anxiety for much longer than I realised. I just figured I was more of a 'worrier' than others. I still use that term but, when it gets to a point where it does affect certain things in life, that's the time to see someone about it.
I didn't actually talk to a professional about how I'd been feeling until earlier this year. I almost didn't bother; thinking I could just deal with it myself. But I'm very glad I did. I took a deep breath and opened up to my GP; talking about how I wasn't even sure what it was, but I have ok days and very bad days. The ok days are when I'm busy and distracted. When I think about things, especially at night, I have these sudden 'crashes' where my moods are so low it's hard to cope. Like I don't feel comfortable in my own skin. I also feel irritable, can't cope with conversation and, although I feel very lonely, I can't bring myself to talk to anyone. I just want to curl up in a ball basically. I hadn't said everything to the GP at that point but she listened, and told me about my options. I could try anti-depressants if I want and/or could use the self referral service Healthy Minds. I decided against the pills (I take enough already) and said I would give counselling a try first.
It took a good couple of weeks before I got up the courage to phone the self referral service. I had written notes, thought about when I'd be free for appointments etc. It was a lot easier than I thought. The initial phonecall was just to take down details and make a phone triage appointment. I would also be sent some mental health questionnaires to fill in. I had those ready for my triage appointment and the psychologist I spoke to was brilliant. After this, she told me she'd send me an appointment soon.
I saw the same person I spoke to on the phone. I only realised it was her when she said. That's what is important about appointments I think; consistency. When you're opening up, speaking about your most personal feelings and experiences, you want to know that it won't be a different person hearing it every time. There's an element of trust to be built up and it encourages you to be open and honest; which altogether helps with gaining the right treatment and support. I've now been diagnosed with Anxiety (I think mild/moderate?) and Depression (moderate/severe). I've had 2 sessions so far, 4 left and think it is going fairly well. There's a few interventions she wants to try as well so I have bits of 'homework' to do.
Before I finally went to see my GP about this, I wasn't even sure if I was ill enough to deserve the help, or even if it was Depression that I had. The NHS website had said this: "If you experience symptoms of depression for most of the day, every day for more than two weeks, you should seek help from your GP."
(source: http://www.nhs.uk/Conditions/Depression/Pages/Diagnosis.aspx)
I saw my symptoms of Depression more as 'crashes'. So it wasn't like a continuous feeling, although the crashes would last a while; up to days, and they would keep coming back. It was only when I realised how much it affected the way I spoke to people, my likelihood to answer the phone, whether I even wanted to speak to anyone, that I realised I needed help. It's all well and good to look after my physical health, but mental health is just as important. The state of your mental health can affect your physical health and vice versa.
I began to open up about my mental health on this blog. I want to branch out and talk more about mental as well as physical health/illness as both are subjects of interest to me; as well as relevant subjects. I wasn't sure about the response I'd get, but it's mainly been a very positive one. I've found that people are more likely to open up to me now and it's surprised me, how many people have been feeling exactly the same, and I didn't even know! As well as helping raise awareness and break down misconceptions, I hope this blog can help me to understand my own friends more and create important connections. I do hope that I am able to give out as much support as I receive as well, I am very grateful.
Stigma- TRIGGER WARNING: Mentions of disablist language.
Stigma can be one of the reasons someone might not seek help about their mental health; whether it be from loved ones or medical professionals. Recently, tabloids have been a major factor in exacerbating stigma. The infamous headline from The Sun for example: "1200 Killed by Mental Patients". The careless sale of "Mental Patient" Halloween costumes by Tesco and Asda also. They have apologised since (too little too late?)
The fact is that more education is needed about mental illnesses; in order to help break down stigma, abolish misconceptions and altogether create better understanding. We also need to look at the language we use. Words such as 'mental', 'psycho' and 'schizo' are extremely offensive and stigmatising. Using this type of language should be seen as just as offensive as using racist language.
Trivialisation of mental illnesses must be stopped also. I have personally heard conditions, such as Bipolar Disorder and Obsessive Compulsive Disorder used in careless ways. Someone may describe themselves as feeling a little Bipolar on a particular day, or may say they are "a bit OCD" because they like things to be neat. Attitudes like this, frankly, are disgusting. You wouldn't say you were feeling "a bit Cancer-y" or "having a bit of Parkinsons" would you? It's completely out of order! Also, remember with illnesses, such as Depression, it isn't a case of "cheering up" or "pulling yourself together". Would you tell someone with a broken leg to walk it off or use "positive thinking" to cure themselves? No you wouldn't. My advice would be to listen to the person, take a bit of time to learn about the illness they have (be it mental or physical) and be understanding and supportive. Don't ask why they feel the way they do. Sometimes that's just the way it is. You don't need a particular reason to have a mental illness.
I am so glad I sought the help I did. I see this as only the start of my journey to get the support and treatment/therapy I need but it is a positive step in the right direction. If you feel that your emotions are getting hard to cope with, I would say talk to someone first of all. Speak to a trusted friend or family member and go to your GP if you feel you need more help. If your GP is unwilling to help then see a different one and remember that it is 'your' mind, 'your' body, 'your' health. Everyone deserves support when things get tough.
Here are some useful links:
http://www.samaritans.org/ - I think this is the first place we think of when in crisis. You can contact them by phone, email, post or you can drop in for a chat.
http://www.mind.org.uk/ - This mental health charity is brilliant, and I would love to volunteer for them some day. You can get information and advice as well as reading up on the experiences of others.
http://www.rethink.org/ - Another brilliant mental health charity. This charity does a lot of campaigning and fundraising.
And finally Healthy Minds http://www.bcpft.nhs.uk/services/for-adults/83-community-services/247-wolverhampton-healthy-minds?eprivacy=1 - This is the self referral service I used; in order to access counselling. It is worth looking to see if there's a similar service in your area. They will assess your needs and, from what I've experienced so far, this does not seem to be a "One size fits all" service.
My post "" will give a bit more information about my own experiences.
I hope this post has been some sort of help but please comment with any suggestions/corrections :)
Friday, 11 October 2013
Thursday, 10 October 2013
My lovely GP is back!
I'm just updating you all, so this will probably just be a short post. Please see my latest one about World Mental Health Day as well :)
Ok, so my GP has returned from her long holiday! I was so glad, really needed to see her and keep her updated on things. I also needed to explain about esa to her and see if she could give me anymore letters etc.
I got there just in time but surgery was running late. I'd been rushing around, getting everything I needed to bring, so didn't realise just how bad my pains were. The waiting room was busy and as I waited I realised just how much pain I was in. It was a mixture of dull achy pains, 'heaviness', weakness in my legs, a tightness around my back and front (almost like an invisible 'belt' of pain?) and sharp pains all over. Now up to a certain degree, you can hide your pain, put on a poker face and get on with whatever you're doing. Mine was so bad that I was covering my mouth to keep from crying out too loud whenever I got the sharp pains. I was really at a point where I honestly didn't care how I looked to other people. I just wanted my appointment to come soon so I could go home to bed soon.
I really do love how my gp is with me. She recognises me, actually reads my notes (which seems to be a rarity with some places!) and I don't have to explain everything over and over again (massive relief when brain fog is bad). Ok so I'd noted down what I wanted to talk about: the Lyrica doing naff all, possibility of a supporting letter for my appeal and needing a new box of the pill.
This is such an understatement but fibromyalgia is such a bloody awkward illness to have. No cure, lifelong, fluctuating and you're lucky if you find medication that actually helps with the symptoms. Before my diagnosis, when doctors were saying it was probably chronic fatigue syndrome, I was prescribed 30mg Citalopram per day. That was increased to 40mg when I said it wasn't working with anything. They didn't even say what it would help with apart from maybe 'calming down' symptoms. All the increase did was make my dizziness and nausea worse as well as making me feel like I wasn't even on this planet. I was like a zombie so stopped that fairly quickly. I was told to give it at least 4 weeks but I was working at the time and didn't want to feel like that whilst at work! After ages of no treatment, and doctors not really bothering, then I got the suggestion of Fibromyalgia and was given Amitriptyline, 30mg per day. That helped a bit with sleep, but did nothing for pain. After that I was prescribed Pregabalin; starting at 50mg per day, went up to 150mg per day. At the higher dose, all it did was make my brain fog worse. So now I have been prescribed Gabapentin, 300mg per day. I've heard mixed reviews about this one but I will power through and hope that it helps a bit. The doctor said that if this one doesn't help, she'll refer me to the pain clinic. So there's options at least.
I just want to start feeling a bit better. All I've had so far are symptoms getting worse. I've gone from managing (but struggling) with full time jobs, to barely leaving the house and daily things (like cooking meals, washing up, showering) being a struggle. I'm young and don't want to spend years and years out of work.
Next one, appeal. I'd brought my copy of my atos report along for the gp to read and she agrees that, with my physical and mental health being so bad, I definitely should be in the support group. What she did say was that rather than me requesting a supporting letter, the dwp will send her a form to fill in if they need extra information from her? Is this right? If I'm honest, I've found the whole thing very confusing. In my esa pack, when I was given the decision, the appeal information was for jsa claimants, which is obviously very wrong...Ah well, it's been acknowledged that I'm appealing now so all I can do is wait and see and take it from there I suppose! I did actually have a missed call from the work programme people today, and when mum called for me (I was pretty much hyperventilating from anxiety), they said that the last interview had been cancelled and to attend on 30th of this month. I have no idea how I'll cope! It's a very busy office and I'll have to remember to let them know about the lift so I'm not struggling up stairs again. Also I'll be with someone different so that's another nerve wracking thing. Oh and what if I'm made to go into a group meeting again? Can I refuse? Ugh it's too confusing...
I was in bed all day after that appointment. Couldn't believe how bad the pain was that day. I know certain things can set off fibro symptoms but sometimes you just get a flare straight out of the blue! Also frustrating.
Ok, leaving it there and moving onto a much more purposeful blog post (hopefully)
Ok, so my GP has returned from her long holiday! I was so glad, really needed to see her and keep her updated on things. I also needed to explain about esa to her and see if she could give me anymore letters etc.
I got there just in time but surgery was running late. I'd been rushing around, getting everything I needed to bring, so didn't realise just how bad my pains were. The waiting room was busy and as I waited I realised just how much pain I was in. It was a mixture of dull achy pains, 'heaviness', weakness in my legs, a tightness around my back and front (almost like an invisible 'belt' of pain?) and sharp pains all over. Now up to a certain degree, you can hide your pain, put on a poker face and get on with whatever you're doing. Mine was so bad that I was covering my mouth to keep from crying out too loud whenever I got the sharp pains. I was really at a point where I honestly didn't care how I looked to other people. I just wanted my appointment to come soon so I could go home to bed soon.
I really do love how my gp is with me. She recognises me, actually reads my notes (which seems to be a rarity with some places!) and I don't have to explain everything over and over again (massive relief when brain fog is bad). Ok so I'd noted down what I wanted to talk about: the Lyrica doing naff all, possibility of a supporting letter for my appeal and needing a new box of the pill.
This is such an understatement but fibromyalgia is such a bloody awkward illness to have. No cure, lifelong, fluctuating and you're lucky if you find medication that actually helps with the symptoms. Before my diagnosis, when doctors were saying it was probably chronic fatigue syndrome, I was prescribed 30mg Citalopram per day. That was increased to 40mg when I said it wasn't working with anything. They didn't even say what it would help with apart from maybe 'calming down' symptoms. All the increase did was make my dizziness and nausea worse as well as making me feel like I wasn't even on this planet. I was like a zombie so stopped that fairly quickly. I was told to give it at least 4 weeks but I was working at the time and didn't want to feel like that whilst at work! After ages of no treatment, and doctors not really bothering, then I got the suggestion of Fibromyalgia and was given Amitriptyline, 30mg per day. That helped a bit with sleep, but did nothing for pain. After that I was prescribed Pregabalin; starting at 50mg per day, went up to 150mg per day. At the higher dose, all it did was make my brain fog worse. So now I have been prescribed Gabapentin, 300mg per day. I've heard mixed reviews about this one but I will power through and hope that it helps a bit. The doctor said that if this one doesn't help, she'll refer me to the pain clinic. So there's options at least.
I just want to start feeling a bit better. All I've had so far are symptoms getting worse. I've gone from managing (but struggling) with full time jobs, to barely leaving the house and daily things (like cooking meals, washing up, showering) being a struggle. I'm young and don't want to spend years and years out of work.
Next one, appeal. I'd brought my copy of my atos report along for the gp to read and she agrees that, with my physical and mental health being so bad, I definitely should be in the support group. What she did say was that rather than me requesting a supporting letter, the dwp will send her a form to fill in if they need extra information from her? Is this right? If I'm honest, I've found the whole thing very confusing. In my esa pack, when I was given the decision, the appeal information was for jsa claimants, which is obviously very wrong...Ah well, it's been acknowledged that I'm appealing now so all I can do is wait and see and take it from there I suppose! I did actually have a missed call from the work programme people today, and when mum called for me (I was pretty much hyperventilating from anxiety), they said that the last interview had been cancelled and to attend on 30th of this month. I have no idea how I'll cope! It's a very busy office and I'll have to remember to let them know about the lift so I'm not struggling up stairs again. Also I'll be with someone different so that's another nerve wracking thing. Oh and what if I'm made to go into a group meeting again? Can I refuse? Ugh it's too confusing...
I was in bed all day after that appointment. Couldn't believe how bad the pain was that day. I know certain things can set off fibro symptoms but sometimes you just get a flare straight out of the blue! Also frustrating.
Ok, leaving it there and moving onto a much more purposeful blog post (hopefully)
Wednesday, 2 October 2013
How do you measure your Worth?
I had my second psychology appointment today. It was supposed to be last week but taxis let me down. My parents are on holiday so I couldn't rely on lifts, had to make it there myself. I've not travelled alone in a while, so it was a chance to test my capabilities both physically and mentally. I want to know how much independence is within my control, I want to take control of my life. I don't want my physical or mental illnesses to control my life.
I had to take a taxi for this appointment, and luckily went with a company who actually sent the taxi on time! And the driver wasn't rude (a rarity round here). Again, I didn't have a clue what I wanted to say in the appointment, but I know the psychologist is lovely and she makes me feel at ease. I'd been given some 'homework' to do during the 10 days I would have the house to myself. I had to make sure I was doing 'something' each day; including something I enjoy. During the 2 week gap between appointments, I also had a work related activity group (esa) meeting. I may go into this in more detail.
We talked through how I'd been coping, how I was feeling, what I'd been up to. She seemed pleased that I'd been trying to keep myself busy, although it was established that I've been pushing myself too far again. Pacing is so hard to do when you just want to walk that bit further, do that bit more, last that bit longer. I have a habit of pushing that bit too much and going from suitably tired to absolutely done in and in need of days of rest.
We spoke about my depression, having the suicidal thoughts etc. I've been trying not to think about it to be honest. Again, I'm constantly looking for distractions. I have a VERY hard time relaxing because my mind seems to constantly be 'on'. Always drifting to thoughts; not necessarily healthy ones either. I said that one of my goals was being able to relax and not be worried about having these thoughts, and to not feel guilty for taking time out for 'me'. I always feel like I have to be 'doing' something (unless I should be sleeping at night of course).
I then mentioned about how I'd noticed my anxiety more, but it didn't seem to be irrational anxiety because it was because of something. My work related activity meetings. I'm still reluctant to talk about anything to do with benefits on a public blog but it's relevant to both my physical and mental health (which is of course, what this blog is 99.999% about!). It's just that every letter comes with threats of sanctioning if you do this, that and the other or don't do this, that or the other. It's like you're on probation or something. You feel as if all eyes are on you, watching your every move (making sure you're not doing more than you say you can do), judging everything, spotting any opportunity to give you the big 'S' (sanction). My last work related meeting was a work programme thingy. The guy on the phone (when booking that appointment) had spoken so quickly, expecting my every answer to be 'no problem', that I hadn't heard his question about extra provisions, disability access etc etc etc. I mean, you assume that any programmes an esa claimant would be put on, is only for an esa claimant. And in the majority of cases (if I'm not mistaken), there will be access issues. You expect the place to be on the ground (or at least 1st) floor of a building. When I got the appointment letter through, I had such a shock. It was to be an 'induction' and was on the 3rd floor of the building. My mum rang the place for me (Have I spoken about this in the last post? Not sure) and they said there was a lift. What they failed to say was that the lift was key operated and I'd have to let a member of staff know when I was buzzed in. So dad took me to the appointment, we were buzzed in and then faced with the lift. I was wondering why the button looked so strange and didn't work! There were no phones or anything so we were stuck. Either go home and get sanctioned for not turning up, or risk my own health by struggling up the stairs.
I'm sure you can guess which option I took and it took a long time to recover from it. 3 flights of stairs to me is probably like climbing a huge mountain for an able bodied person. Every step set off my painful hip, my feet burned, my back hurt like hell, I fell a few times, I was sweating profusely (yum), anxiety was ridiculous, but I managed it. Now let me make this PERFECTLY CLEAR to anyone judging me for climbing 3 flights of stairs when I say I usually can only make 1. This DOES NOT MEAN that I can manage 3 flights of stairs safely, reliably, repeatedly and within a reasonable amount of time. This is the kind of thing that drains my spoons, sets off major flares, is very risky to my physical health and is only something I could do once in a blue moon when there is absolutely no other option. Anyway, I got through the doors and signed in. Had a few funny looks from people (who I later found out were jsa claimants, not esa ones????) but this was probably because of the effect taking these stairs had on me. Straight after this, we were whisked into a meeting room and given a group presentation. I wasn't entirely sure what was going on but what I did know was that the presenter was talking about jobs and we were in a group situation. This was a very very high stress situation for me. My overactive bladder means group situations are a no go and I am in no way ready for working yet, so of course I am not thinking about the kind of work I want to do. My physical health is the main reason, but my mental health also plays a big part. Things which shouldn't be stressful generally, are extremely stress inducing for me. And what job is stress free? Long story short, I ended up breaking down, being taken out the room, meeting my personal advisor, filling in lots of paperwork (my hands were KILLING ME), talking about all my lovely little symptoms within earshot of everyone around me. I also had to set job goals, I mean wtf? I'm here to be supported, not to be pushed into work when I should be focusing on my health? It's not that I don't know HOW to look for work, it's that I'm TOO ILL for work. It was HORRIBLE. After that I decided I should really appeal. So that's where I'm at now.
I explained all this to the psychologist and she said she completely understood why I was so anxious, I was even showing my anxiety right there and then (and usually I hide all my illnesses extremely well). She was furious that I was forced to walk up stairs and even said that if she'd known, she would've rang up the office manager and insisted I was allowed to go home. How nice of her! :) It's so great to have someone (in a medical profession) on my side. She understands that I can't work yet and it'll probably be a while before I'm in a situation where it's a realistic goal. It's so great to have a professional whose main focus isn't trying to get me back into work ASAP. It surprises me as well. I won't go into detail with the rest of the appointment, but her (wonderful :) ) attitude towards this got me thinking about how important the concept of being in employment seems to be in our country (in our culture even)?
I'm not going to go off into some sort of capitalism rant. I won't even go that political but I will mention the Conservative slogan which seems to be everywhere: "For Hardworking People".
Are we only 'hardworking' when we are in employment? Are we not worth having human rights otherwise? You see, in this country, it seems that our 'worth' is measured by the things we achieve. And valid 'achievements' are always career oriented whether it be directly or indirectly. It seems (and isn't my view at all, let me just say), that you only have real 'worth' if you are working or studying. Your level of success seems to be measured by what degree/s you've done, what subject they were in, the grades you achieved, what work experience you've done, your employment history, how much you earn, how far up the career ladder you are. It seems to be socially unacceptable that you may not be working or studying (for whatever reason). I have had to really think about achievements. Beforehand, I did have this view about myself. That my only valid achievements would be education or work based. My goals would be:
When it comes to illness and/or disability, the focus doesn't appear to be on your health and making sure you're getting the support you can. It's about 'supporting' you into getting into work as soon as possible. There is so much pressure to get well that it makes you feel guilty that you're not getting well (or is it just me?). I certainly felt that way at the wrag meeting. I suppose the clue is in the name but still, the pressure is very high.
I had to take a taxi for this appointment, and luckily went with a company who actually sent the taxi on time! And the driver wasn't rude (a rarity round here). Again, I didn't have a clue what I wanted to say in the appointment, but I know the psychologist is lovely and she makes me feel at ease. I'd been given some 'homework' to do during the 10 days I would have the house to myself. I had to make sure I was doing 'something' each day; including something I enjoy. During the 2 week gap between appointments, I also had a work related activity group (esa) meeting. I may go into this in more detail.
We talked through how I'd been coping, how I was feeling, what I'd been up to. She seemed pleased that I'd been trying to keep myself busy, although it was established that I've been pushing myself too far again. Pacing is so hard to do when you just want to walk that bit further, do that bit more, last that bit longer. I have a habit of pushing that bit too much and going from suitably tired to absolutely done in and in need of days of rest.
We spoke about my depression, having the suicidal thoughts etc. I've been trying not to think about it to be honest. Again, I'm constantly looking for distractions. I have a VERY hard time relaxing because my mind seems to constantly be 'on'. Always drifting to thoughts; not necessarily healthy ones either. I said that one of my goals was being able to relax and not be worried about having these thoughts, and to not feel guilty for taking time out for 'me'. I always feel like I have to be 'doing' something (unless I should be sleeping at night of course).
I then mentioned about how I'd noticed my anxiety more, but it didn't seem to be irrational anxiety because it was because of something. My work related activity meetings. I'm still reluctant to talk about anything to do with benefits on a public blog but it's relevant to both my physical and mental health (which is of course, what this blog is 99.999% about!). It's just that every letter comes with threats of sanctioning if you do this, that and the other or don't do this, that or the other. It's like you're on probation or something. You feel as if all eyes are on you, watching your every move (making sure you're not doing more than you say you can do), judging everything, spotting any opportunity to give you the big 'S' (sanction). My last work related meeting was a work programme thingy. The guy on the phone (when booking that appointment) had spoken so quickly, expecting my every answer to be 'no problem', that I hadn't heard his question about extra provisions, disability access etc etc etc. I mean, you assume that any programmes an esa claimant would be put on, is only for an esa claimant. And in the majority of cases (if I'm not mistaken), there will be access issues. You expect the place to be on the ground (or at least 1st) floor of a building. When I got the appointment letter through, I had such a shock. It was to be an 'induction' and was on the 3rd floor of the building. My mum rang the place for me (Have I spoken about this in the last post? Not sure) and they said there was a lift. What they failed to say was that the lift was key operated and I'd have to let a member of staff know when I was buzzed in. So dad took me to the appointment, we were buzzed in and then faced with the lift. I was wondering why the button looked so strange and didn't work! There were no phones or anything so we were stuck. Either go home and get sanctioned for not turning up, or risk my own health by struggling up the stairs.
I'm sure you can guess which option I took and it took a long time to recover from it. 3 flights of stairs to me is probably like climbing a huge mountain for an able bodied person. Every step set off my painful hip, my feet burned, my back hurt like hell, I fell a few times, I was sweating profusely (yum), anxiety was ridiculous, but I managed it. Now let me make this PERFECTLY CLEAR to anyone judging me for climbing 3 flights of stairs when I say I usually can only make 1. This DOES NOT MEAN that I can manage 3 flights of stairs safely, reliably, repeatedly and within a reasonable amount of time. This is the kind of thing that drains my spoons, sets off major flares, is very risky to my physical health and is only something I could do once in a blue moon when there is absolutely no other option. Anyway, I got through the doors and signed in. Had a few funny looks from people (who I later found out were jsa claimants, not esa ones????) but this was probably because of the effect taking these stairs had on me. Straight after this, we were whisked into a meeting room and given a group presentation. I wasn't entirely sure what was going on but what I did know was that the presenter was talking about jobs and we were in a group situation. This was a very very high stress situation for me. My overactive bladder means group situations are a no go and I am in no way ready for working yet, so of course I am not thinking about the kind of work I want to do. My physical health is the main reason, but my mental health also plays a big part. Things which shouldn't be stressful generally, are extremely stress inducing for me. And what job is stress free? Long story short, I ended up breaking down, being taken out the room, meeting my personal advisor, filling in lots of paperwork (my hands were KILLING ME), talking about all my lovely little symptoms within earshot of everyone around me. I also had to set job goals, I mean wtf? I'm here to be supported, not to be pushed into work when I should be focusing on my health? It's not that I don't know HOW to look for work, it's that I'm TOO ILL for work. It was HORRIBLE. After that I decided I should really appeal. So that's where I'm at now.
I explained all this to the psychologist and she said she completely understood why I was so anxious, I was even showing my anxiety right there and then (and usually I hide all my illnesses extremely well). She was furious that I was forced to walk up stairs and even said that if she'd known, she would've rang up the office manager and insisted I was allowed to go home. How nice of her! :) It's so great to have someone (in a medical profession) on my side. She understands that I can't work yet and it'll probably be a while before I'm in a situation where it's a realistic goal. It's so great to have a professional whose main focus isn't trying to get me back into work ASAP. It surprises me as well. I won't go into detail with the rest of the appointment, but her (wonderful :) ) attitude towards this got me thinking about how important the concept of being in employment seems to be in our country (in our culture even)?
I'm not going to go off into some sort of capitalism rant. I won't even go that political but I will mention the Conservative slogan which seems to be everywhere: "For Hardworking People".
Are we only 'hardworking' when we are in employment? Are we not worth having human rights otherwise? You see, in this country, it seems that our 'worth' is measured by the things we achieve. And valid 'achievements' are always career oriented whether it be directly or indirectly. It seems (and isn't my view at all, let me just say), that you only have real 'worth' if you are working or studying. Your level of success seems to be measured by what degree/s you've done, what subject they were in, the grades you achieved, what work experience you've done, your employment history, how much you earn, how far up the career ladder you are. It seems to be socially unacceptable that you may not be working or studying (for whatever reason). I have had to really think about achievements. Beforehand, I did have this view about myself. That my only valid achievements would be education or work based. My goals would be:
- Get a psychology degree
- Get a masters degree in Clinical Psychology
- Get a job in an office, build up experience
- Get into an NHS job
- Get mental health, clinical experience
- Get a Clinical Psychology Doctorate
- Do my Psychology training
- Become a Clinical Psychologist
- Get married
- Own a house
- Have children
- Build up a respectable pension
Pretty ambitious huh? And only 2 or 3 of them aren't to do with studying or working. Since becoming chronically ill, my achievements have to be smaller but still something I can feel proud I achieved. I had to adjust my whole perception of 'achievement'. My goals are more about health and independence:
- Walk to a shop by myself
- Meet up with friends more often (maybe once a week even?)
- Take a longer journey by myself
- Get onto medication which helps my symptoms
- Take more control of my mental health
- Be well enough to cope with a relationship again
- Strengthen my leg muscles enough that I don't have to walk with a stick anymore (not sure how this one will pan out as my fibro is so unpredictable)
When it comes to illness and/or disability, the focus doesn't appear to be on your health and making sure you're getting the support you can. It's about 'supporting' you into getting into work as soon as possible. There is so much pressure to get well that it makes you feel guilty that you're not getting well (or is it just me?). I certainly felt that way at the wrag meeting. I suppose the clue is in the name but still, the pressure is very high.
Tuesday, 24 September 2013
I can do this
My parents set off for their holiday this morning and the house is so quiet now! I'm rather jealous of them, could do with some sun, sand and sea but I couldn't afford it. Ah well, maybe next year! Frankly, I'd be happy even with just a weekend in Llandudno or something. My city isn't exactly the most cheerful place to be.
I haven't had a house to myself since uni, and my health was a bit better round that time, so obviously I'm quite nervous. My brainfog's been awful so the house is full of lists of things to do, to remember when certain people are turning up, appointments etc. Good job I've kept all my letters :)
Argh I'm glad of a bit of peace and quiet. I love my parents to bits but my dad in particular can make a stressful situation ten times worse. I know he doesn't mean it and he does eventually calm down if you have a word with him, but he's a real stress head (more so than me!!) and he likes to pace, and huff and puff, and sigh, and swear and generally get angry at the smallest things. When I'm in the middle of a flare, or generally having a bad fibro day, it does. not. help. I don't think he gets the concept of sensitivity to sound either...
I am nervous though, for many reasons. I worry about having to take myself to my next psych appointment, haven't travelled alone in a while. I hope I don't get all anxious when I sign in at reception. I get all disorientated on my own anyway. Need to learn how to be calmer and feel more in control. I also worry about the horrible thoughts going into my head when I'm alone. I will try to distract myself but sometimes it's impossible and I end up curled up in a ball crying at nothing in particular. Also, I have a phone WRAG appointment. I hate phones but getting to the place is so stressful and exhausting even with dad driving me and coming in with me. I barely coped the last time! I also worry about housework and shopping; whether I'll cope with that on my own. There's no one to take over if I can't do it so I'm gonna have to pace myself very very strictly; hence the lists. I have one thing to do a day, housework-wise. Two if it's a good day. If I can manage to run a hoover round it is gonna have to be literally the ONLY thing I do that day. It puts strain on my shoulder, arms, legs, hips and back. Not fun but it does have to be done.
The friends who still talk to me are being amazing :) They've offered to help if needs be. I'm the kind of person who is always too polite (or stubborn!) to ask for help but I will listen to my body and ask if needs be :)
The psychologist has told me that I have to make sure I'm doing one thing each day that I enjoy. I plan to get the musical instruments out and see just how rusty I am hehe! My flute teacher in particular said to never give up playing flute. Back in 6th form, she said I'd got to a point where I was able to play pretty much anything. I'm thinking of having a crack at the Pride and Prejudice soundtrack :)
Ok, I think I'll leave it here. I'm pretty sleep deprived and knackered so should listen to the advice my parents gave, after my hectic few days, and REST.
I haven't had a house to myself since uni, and my health was a bit better round that time, so obviously I'm quite nervous. My brainfog's been awful so the house is full of lists of things to do, to remember when certain people are turning up, appointments etc. Good job I've kept all my letters :)
Argh I'm glad of a bit of peace and quiet. I love my parents to bits but my dad in particular can make a stressful situation ten times worse. I know he doesn't mean it and he does eventually calm down if you have a word with him, but he's a real stress head (more so than me!!) and he likes to pace, and huff and puff, and sigh, and swear and generally get angry at the smallest things. When I'm in the middle of a flare, or generally having a bad fibro day, it does. not. help. I don't think he gets the concept of sensitivity to sound either...
I am nervous though, for many reasons. I worry about having to take myself to my next psych appointment, haven't travelled alone in a while. I hope I don't get all anxious when I sign in at reception. I get all disorientated on my own anyway. Need to learn how to be calmer and feel more in control. I also worry about the horrible thoughts going into my head when I'm alone. I will try to distract myself but sometimes it's impossible and I end up curled up in a ball crying at nothing in particular. Also, I have a phone WRAG appointment. I hate phones but getting to the place is so stressful and exhausting even with dad driving me and coming in with me. I barely coped the last time! I also worry about housework and shopping; whether I'll cope with that on my own. There's no one to take over if I can't do it so I'm gonna have to pace myself very very strictly; hence the lists. I have one thing to do a day, housework-wise. Two if it's a good day. If I can manage to run a hoover round it is gonna have to be literally the ONLY thing I do that day. It puts strain on my shoulder, arms, legs, hips and back. Not fun but it does have to be done.
The friends who still talk to me are being amazing :) They've offered to help if needs be. I'm the kind of person who is always too polite (or stubborn!) to ask for help but I will listen to my body and ask if needs be :)
The psychologist has told me that I have to make sure I'm doing one thing each day that I enjoy. I plan to get the musical instruments out and see just how rusty I am hehe! My flute teacher in particular said to never give up playing flute. Back in 6th form, she said I'd got to a point where I was able to play pretty much anything. I'm thinking of having a crack at the Pride and Prejudice soundtrack :)
Ok, I think I'll leave it here. I'm pretty sleep deprived and knackered so should listen to the advice my parents gave, after my hectic few days, and REST.
Wednesday, 18 September 2013
Brainfog
I think this is probably going to end up another rambling of things that pop into my head, but recently I've been reading up, watching videos etc on brain fog and dissociation and it just feels weird how much I can relate to it.
This video has nothing to do with Fibromyalgia, but is about a man talking through how it feels to have Depersonalization Disorder and the symptom of dissociation associated with it.
https://www.youtube.com/watch?v=j_rEBKxW3qE&feature=player_embedded
(I'm not sure if I need to put any kind of reference here, but I don't want to take the credit for it or anything. I came across the video on a support group for invisible illnesses)
I guess brain fog can differ for each person who experiences it. It affects how easily someone functions. at differing levels for everyone. I think I've had the dissociation side of things for much longer than I had fibromyalgia symptoms; right back to when I was in secondary school. I wasn't diagnosed with any anxiety disorder but I suppose these symptoms could have been caused by the anxiety I experienced from bullying. Let's go back to those feelings.
I used to feel very self conscious at school. It was all about image, how you dressed, what your hair was like, how loud you spoke, your body language and mostly about fitting in. I'd have times where I experienced what I suppose now would be a mild form of dissociation. It was like I was watching myself walking through the corridors, sitting in the classroom, reading whatever exercise book we'd been given etc. I don't think my concentration was that bad unless my mood was low. But yes, everything used to feel so surreal and it was more often the case when I was in classes with the bullies. They may not have been saying anything to me at the time, it may have been afterwards, when I was just left on my own with no one to talk to. Maybe it was my way of protecting myself? It was a strange time in my life anyway. It did sometimes feel like I was watching myself saying words to another person when I was talking. Like it wasn't really me speaking.
I get these feelings now, especially when I'm at medical appointments etc. I don't know if that's separate to the brain fog or a part of it but I will explain the other part below.
Imagine a really simple sentence. Something about your day maybe, e.g. "Today I ate some pasta". Now imagine you can't think of the word "pasta". You either say a completely different word or your mind draws a complete blank. This happens as quickly as flicking a light switch. One minute you know exactly what you want to say, the next, it's like you can't mentally access what you want to say next. I guess it's hard to imagine if you've not experienced it yourself. It's not particularly easy explaining brain fog and showing that it's more than just your mind going blank once in a blue moon, because it happens on a very regular basis. I have times where I don't even realise I've said the wrong word/s. I may have said something to someone and in my head, what I thought I said was completely different to (and a lot more sensical than) what I actually said. No wonder this person is giving me weird looks!! In my experience, it's happened when filling in paperwork as well. I've put a word twice without realising, I've put 'ing' at the end of a word about 3 times, I've missed out the main word in a sentence. "I felt 5 times this week" (missing out the word "dizzy" when it's the most important point to make). I also have had times where I get my S's and my C's mixed up. Like I'm asking how to spell something someone asked me to write down for them and they say something like "It's spelled *something something* S" I keep writing down C. Does this make any sense? lol.
Ok so, I'm not speaking for everyone who has brain fog of course. I'm sure it affects everyone (who suffers from it) in different ways. This is just me explaining what it feels like to me in particular.
This video has nothing to do with Fibromyalgia, but is about a man talking through how it feels to have Depersonalization Disorder and the symptom of dissociation associated with it.
https://www.youtube.com/watch?v=j_rEBKxW3qE&feature=player_embedded
(I'm not sure if I need to put any kind of reference here, but I don't want to take the credit for it or anything. I came across the video on a support group for invisible illnesses)
I guess brain fog can differ for each person who experiences it. It affects how easily someone functions. at differing levels for everyone. I think I've had the dissociation side of things for much longer than I had fibromyalgia symptoms; right back to when I was in secondary school. I wasn't diagnosed with any anxiety disorder but I suppose these symptoms could have been caused by the anxiety I experienced from bullying. Let's go back to those feelings.
I used to feel very self conscious at school. It was all about image, how you dressed, what your hair was like, how loud you spoke, your body language and mostly about fitting in. I'd have times where I experienced what I suppose now would be a mild form of dissociation. It was like I was watching myself walking through the corridors, sitting in the classroom, reading whatever exercise book we'd been given etc. I don't think my concentration was that bad unless my mood was low. But yes, everything used to feel so surreal and it was more often the case when I was in classes with the bullies. They may not have been saying anything to me at the time, it may have been afterwards, when I was just left on my own with no one to talk to. Maybe it was my way of protecting myself? It was a strange time in my life anyway. It did sometimes feel like I was watching myself saying words to another person when I was talking. Like it wasn't really me speaking.
I get these feelings now, especially when I'm at medical appointments etc. I don't know if that's separate to the brain fog or a part of it but I will explain the other part below.
Imagine a really simple sentence. Something about your day maybe, e.g. "Today I ate some pasta". Now imagine you can't think of the word "pasta". You either say a completely different word or your mind draws a complete blank. This happens as quickly as flicking a light switch. One minute you know exactly what you want to say, the next, it's like you can't mentally access what you want to say next. I guess it's hard to imagine if you've not experienced it yourself. It's not particularly easy explaining brain fog and showing that it's more than just your mind going blank once in a blue moon, because it happens on a very regular basis. I have times where I don't even realise I've said the wrong word/s. I may have said something to someone and in my head, what I thought I said was completely different to (and a lot more sensical than) what I actually said. No wonder this person is giving me weird looks!! In my experience, it's happened when filling in paperwork as well. I've put a word twice without realising, I've put 'ing' at the end of a word about 3 times, I've missed out the main word in a sentence. "I felt 5 times this week" (missing out the word "dizzy" when it's the most important point to make). I also have had times where I get my S's and my C's mixed up. Like I'm asking how to spell something someone asked me to write down for them and they say something like "It's spelled *something something* S" I keep writing down C. Does this make any sense? lol.
Ok so, I'm not speaking for everyone who has brain fog of course. I'm sure it affects everyone (who suffers from it) in different ways. This is just me explaining what it feels like to me in particular.
Friday, 13 September 2013
Eye emergency, WRAG appointment and first Healthy Minds counselling session
Heyy, I think this is a bit of an updating blog post again. I'm absolutely exhausted from all these appointments and I have more to make! Blah.
Ok, first one,
Eye Emergency:
I wear monthly contact lenses about 2 or 3 times a week. When I first got them, I was told eye drops weren't needed unless my eyes got too dry. I didn't have any problems up until Saturday night. A couple of hours after I took out my contacts (carefully and very hygienically might I add) I had some irritation in my right eye. It only felt like a little scratch and, when I checked in the mirror, I couldn't find anything. I went to bed and slept soon after that.
I woke up at around 4am on the Sunday in absolute agony. My vision was very blurry, I felt like my right eye had been wrapped in barbed wire and it burned like it was on fire. I also could barely open it because it was all red and swollen. I woke my parents up to tell them and they said it might be severe conjunctivitis and to try and sleep, then we'll see what it's like in the morning. I spent the rest of that night, tossing and turning with a cold wet flannel on my eye, trying to soothe the pain as much as possible. Needless to say, the pain hadn't subsided and I was screaming out in pain. Dad took me to A&E.
Because it was an eye emergency, they got me seen to as quickly as possible and I was told I had a lot of severe abrasions on my eye (my left was fine though) and that it was probably due to my contact lenses damaging them. I had to take 2 types of eye drops hourly and 1 type 3 times a day. It would make my vision blurry as the one type of eye drop was designed to dilate the pupil of the affected eye. It's still quite blurry now but not as bad as before. I had to wait until today to write this post because of the blurry vision. Having it constantly made me feel really disorientated, dizzy, nauseated and generally feeling ill. Luckily the damage isn't permanent and the scratches are pretty much all gone.
When I went for my follow up appointment yesterday, the Opthalmologist told me I had permanent white marks on my cornea as well. This was due to a virus I'd had (no idea what virus it is, but there you go!) I could've been prescribed steroids to get rid of them, but I'd be on them for life. I decided against this as the marks were purely cosmetic. They don't hurt or affect my vision so I don't want to be on even more medication; especially not steroids!
WRAG Appointment:
On Tuesday I had my first Work Related Activity Group appointment. It took a while to walk from my dads car to that appointment; as there is no parking nearby. I had to keep stopping as my leg was getting weaker (my right one seems quite weak at the moment) I was getting dizzy, tired and couldn't catch my breath. I think there's some disabled spaces nearby but I'm on the fence as to whether it's worth all the stress and possible rejection to get a blue badge. I know I need one but all these appointments wear me out so much, I just don't know if I have the energy for another assessment.
Anyway, I got there just in time and was taken straight to the advisor. She asked me about my condition, limitations etc then told me straight off that the DWP saw Fibromyalgia as a short term condition so I would not see her again. Short term? Friggin short term? I've had this over 3 years and it has got worse! I don't see that as short term, do you? So she said I had been placed on the Work Programme and was to be dealt with by another organisation. I told the advisor that Fibromyalgia is a long term condition. Once you have it, it's for life as it's incurable. She actually knew this, as her auntie has it, but unfortunately she doesn't have the power to argue the DWP's decision.
I hate having this condition. If I'm going to be this ill for this long, I'd rather have something that is a lot easier to prove through blood tests, scans etc. Why do I have to feel like I'm on trial all the time? If one of the decision makers could step inside my body for a week, they'd know full well what my limitations are, how I never really have a 'good' day, why I don't make regular plans because I can't predict how things will be on a particular day and I hate letting people down.
Ok, so I was sent away after all the admin-y things were sorted. Paperwork given out, being put on the phone to this organisation (with Pertemps would you believe. i.e. a recruitment agency?). I'm on the work programme for 2 years but I think the advisor mentioned I might be reassessed in 6 months as my condition is 'apparently' "likely to improve" in 6 months. Well it hasn't improved within 3 years, so, unless the doctors come up with some miracle treatment, I'm not too optimistic :/.
I had a letter come the other day, called the Invitation to Work Programme. I had a real panic when I read the details! It talked about an induction that would last between 2 and 3 hours. Now when I read the word "induction", I thought I'd be expected to do lots of work-related tasks (office work, filing etc). I was imagining being plonked at a computer and having to do 2-3 hours worth of work! No wonder I panicked. I may be able to sit at a computer for a bit, but I'm writing this sat on the sofa, moving my legs so they don't stiffen, part-dislocate or cramp up and cause extreme pain. I have 2 cushions and a pillow behind me so my back doesn't hurt too much. Even though I have all this, my neck, shoulders, back, hips and legs still hurt and my hands cramp up easily so I have to rest every 10 minutes or so. And this is at home. What office would provide me a very cushioned chair with space to move my legs constantly and no targets so I can rest my hands/arms without severely disrupting productivity? This is part of the reason why I can't even consider basic office work at the moment.
Well after my panic, my mum kindly rang this place for me. It turns out, this induction is more like an interview with an advisor there. The timescale was also an average time because of how busy the building gets. I can now expect to wait up to an hour. This means my dad can come in with me thank god. This is also the limitation I have. I have to have someone with me for appointments, interviews etc. I don't get anxious talking to a person I don't recognise, but I find it hard explaining everything because of my brainfog. I already forgot to tell the original adviser about my leg stiffness and I really hope this new adviser has the atos report. I will bring along my copy just in case. I just really hope I'm not forced to do things like work experience etc. When I feel I can cope with work situations, I will be doing everything I can, but doing too much causes major flares for me at the moment. It's just not worth the risk!
I will keep you updated on these appointments.
First Healthy Minds Counselling Appointment
TRIGGER WARNING: Mentions of suicidal thoughts and abortion.
On Wednesday I had my first counselling appointment with Healthy Minds. I had no idea what to expect to be honest. I'd been feeling pretty numb recently, trying to distract myself so I didn't think for too long, so I wasn't sure how to explain everything to the therapist. I thought about writing notes, but didn't know what to put, so I just went along and hoped my mind wouldn't let me down.
The therapist was really good. She asked me lots of questions but didn't rush me. It felt more like a chat I guess, although some things were hard to talk about. We covered so much and she kept me informed of everything.
We talked about my suicidal thoughts. I feel so bad talking about this because I end up doing it in such a matter of fact and calm way. I don't want people thinking I'm sick in the head or something. I know it's not healthy feeling this way and thinking about suicide as often as I do. I may not be planning to do anything (although, admittedly, I do come close sometimes) but it's always at the back of my mind. I don't really know how I'd do it. I told the therapist about the methods I've thought of but I was scared about being unsuccessful and ending up in agony in hospital getting my stomach pumped or something. It's something I think of as this option if things ever went absolutely tits up i.e. if I alienated more friends, family and/or realised just how hopeless my love-life was. I feel like I've lost so much already, but I know that I would hurt and upset and anger people even more if I went through with it. As much as I feel like a burden and a shit friend, I'd feel even guiltier if I ended it all. The feelings always get stronger when my symptoms are worse. Feeling sick to my stomach, weak, in pain all over, can't think straight, can't concentrate on a thing, have to cancel plans. When I feel that way, I can't do anything but think and then I have the horrible 'crashes'. It's just that option I think of when I just want everything to stop. If my life will never get better, I don't want that life. My parents go on holiday near the end of this month. Because of the thoughts and crashes and self loathing I have, I worry about being in the house on my own for this long (10 days). I had to just stop hiding it and tell the therapist that I worry about these thoughts and that I worry about getting so low I do plan out ending it all (I'm so so sorry guys, I know this is horrible but I have to be honest here!). I think that worried her to be honest. I don't think I'd do it. I'm not in the frame of mind right now where I would do it. But what if I get to a stage where I don't think about my friends, family, the future etc. What if this 'thought' is all I can think of? She said she wants to see me for an appointment during these 10 days. I think she wants to make sure I keep my moods up as much as I can so I can cope with being alone. She also said I need to try and make plans, have friends over etc. I will definitely try. Believe me, I don't want to have these horrible thoughts. It's just hard to control sometimes. I told the therapist how I rely on distractions.
We then talked about the abortion. I actually shudder when I say or read that word. It just sounds so abrupt and it drips with stigma. I couldn't think straight when I was explaining it to her. I was trying to explain how I needed to get closure and to stop feeling guilty. I feel so guilty and selfish for doing it because I wasn't so ill that carrying a child to full term would be too difficult to cope with. I know people who have had children at young ages and they are brilliant mothers. Maybe I felt like I'd taken the coward's way out? I made the decision so so quickly. I was young, irresponsible (I drank a lot and very often), all I wanted to do at the time was be young, but finish my education and stick to my plans. I wanted to do everything for 'me' I guess. This is why I felt selfish. It wasn't this baby's fault that I wasn't ready for him/her. But I was only 5 weeks pregnant at the time. The therapist asked me "What if you had had the baby?". When I talked through what my plans would be, I felt even worse because I felt that maybe I had made the wrong decision. I've always wanted to be a mother. Hindsight is a real bitch isn't it? It's bringing me to tears pouring my heart out here. All my deepest darkest thoughts out there. Keeping them bottled up just eats me up inside though.
The therapist said that she would refer me to a bereavement counsellor. That set me off again. The word bereavement. She said she felt that I'd never had time to grieve. I suppose I haven't really. I went through all this literally days before my first year exams and I never even told my university about it. I went to my appointments, took the pills that made everything happen and took the strong codeine to help with the pain. I brought my little box of codeine to my exams, sat at the back, held my stomach, grit my teeth and got on with it. I had to throw myself into my studies as much as possible so I couldn't think about this. I had to push every single emotion right down so it couldn't break me.
We then turned to the computer to do all the depression, anxiety and phobia questions again. To see how things had changed since my triage appointment. Beforehand, my depression score was so high that the therapist said antidepressants would have been needed alongside the counselling. Now I am in the moderate/severe depression category. I told her I didn't want anti-depressants because they didn't suit me before. They made it even harder to think clearly and not being able to access my thoughts scared me. So talking therapy it is. We had a look at my anxiety score and I think that one had gone down a bit as well. The anxiety is mainly due to my overactive bladder. I worry so much about situations that do not make it easy to access a toilet. We need to work on this, and I need to be more assertive in those situations. I told her about the lack of a toilet in the jobcentre, and how this made me have panic attacks. It caused me to be sanctioned, as I would get very ill just before my jobcentre appointments and would have panic attacks so bad I couldn't got to any group sessions. And this was back when I thought I was well enough to work!
The phobia section hadn't really changed. I have had a phobia of wasps for a long time. I'm not sure how I got it. I used to be a bit scared of wasps but it didn't affect going outside or eating/drinking outside when it's sunny. Nowadays I will avoid anywhere I can see even just one little wasp. My blood runs cold if one goes near me and I feel really faint for a while afterwards.
Ok so, at the end of this appointment she gave me some 'homework' to complete over the next fortnight. I have to keep a 7 day diary of what I did and how I felt on a scale of 0-8. I also have to write down what I do/plan in those 10 days. She seems really lovely and supportive. She's also sending me some breathing exercises and a relaxation CD as the nights tend to be the worst for me and I want to sleep better/earlier.
I will keep you all updated :)
Ok, first one,
Eye Emergency:
I wear monthly contact lenses about 2 or 3 times a week. When I first got them, I was told eye drops weren't needed unless my eyes got too dry. I didn't have any problems up until Saturday night. A couple of hours after I took out my contacts (carefully and very hygienically might I add) I had some irritation in my right eye. It only felt like a little scratch and, when I checked in the mirror, I couldn't find anything. I went to bed and slept soon after that.
I woke up at around 4am on the Sunday in absolute agony. My vision was very blurry, I felt like my right eye had been wrapped in barbed wire and it burned like it was on fire. I also could barely open it because it was all red and swollen. I woke my parents up to tell them and they said it might be severe conjunctivitis and to try and sleep, then we'll see what it's like in the morning. I spent the rest of that night, tossing and turning with a cold wet flannel on my eye, trying to soothe the pain as much as possible. Needless to say, the pain hadn't subsided and I was screaming out in pain. Dad took me to A&E.
Because it was an eye emergency, they got me seen to as quickly as possible and I was told I had a lot of severe abrasions on my eye (my left was fine though) and that it was probably due to my contact lenses damaging them. I had to take 2 types of eye drops hourly and 1 type 3 times a day. It would make my vision blurry as the one type of eye drop was designed to dilate the pupil of the affected eye. It's still quite blurry now but not as bad as before. I had to wait until today to write this post because of the blurry vision. Having it constantly made me feel really disorientated, dizzy, nauseated and generally feeling ill. Luckily the damage isn't permanent and the scratches are pretty much all gone.
When I went for my follow up appointment yesterday, the Opthalmologist told me I had permanent white marks on my cornea as well. This was due to a virus I'd had (no idea what virus it is, but there you go!) I could've been prescribed steroids to get rid of them, but I'd be on them for life. I decided against this as the marks were purely cosmetic. They don't hurt or affect my vision so I don't want to be on even more medication; especially not steroids!
WRAG Appointment:
On Tuesday I had my first Work Related Activity Group appointment. It took a while to walk from my dads car to that appointment; as there is no parking nearby. I had to keep stopping as my leg was getting weaker (my right one seems quite weak at the moment) I was getting dizzy, tired and couldn't catch my breath. I think there's some disabled spaces nearby but I'm on the fence as to whether it's worth all the stress and possible rejection to get a blue badge. I know I need one but all these appointments wear me out so much, I just don't know if I have the energy for another assessment.
Anyway, I got there just in time and was taken straight to the advisor. She asked me about my condition, limitations etc then told me straight off that the DWP saw Fibromyalgia as a short term condition so I would not see her again. Short term? Friggin short term? I've had this over 3 years and it has got worse! I don't see that as short term, do you? So she said I had been placed on the Work Programme and was to be dealt with by another organisation. I told the advisor that Fibromyalgia is a long term condition. Once you have it, it's for life as it's incurable. She actually knew this, as her auntie has it, but unfortunately she doesn't have the power to argue the DWP's decision.
I hate having this condition. If I'm going to be this ill for this long, I'd rather have something that is a lot easier to prove through blood tests, scans etc. Why do I have to feel like I'm on trial all the time? If one of the decision makers could step inside my body for a week, they'd know full well what my limitations are, how I never really have a 'good' day, why I don't make regular plans because I can't predict how things will be on a particular day and I hate letting people down.
Ok, so I was sent away after all the admin-y things were sorted. Paperwork given out, being put on the phone to this organisation (with Pertemps would you believe. i.e. a recruitment agency?). I'm on the work programme for 2 years but I think the advisor mentioned I might be reassessed in 6 months as my condition is 'apparently' "likely to improve" in 6 months. Well it hasn't improved within 3 years, so, unless the doctors come up with some miracle treatment, I'm not too optimistic :/.
I had a letter come the other day, called the Invitation to Work Programme. I had a real panic when I read the details! It talked about an induction that would last between 2 and 3 hours. Now when I read the word "induction", I thought I'd be expected to do lots of work-related tasks (office work, filing etc). I was imagining being plonked at a computer and having to do 2-3 hours worth of work! No wonder I panicked. I may be able to sit at a computer for a bit, but I'm writing this sat on the sofa, moving my legs so they don't stiffen, part-dislocate or cramp up and cause extreme pain. I have 2 cushions and a pillow behind me so my back doesn't hurt too much. Even though I have all this, my neck, shoulders, back, hips and legs still hurt and my hands cramp up easily so I have to rest every 10 minutes or so. And this is at home. What office would provide me a very cushioned chair with space to move my legs constantly and no targets so I can rest my hands/arms without severely disrupting productivity? This is part of the reason why I can't even consider basic office work at the moment.
Well after my panic, my mum kindly rang this place for me. It turns out, this induction is more like an interview with an advisor there. The timescale was also an average time because of how busy the building gets. I can now expect to wait up to an hour. This means my dad can come in with me thank god. This is also the limitation I have. I have to have someone with me for appointments, interviews etc. I don't get anxious talking to a person I don't recognise, but I find it hard explaining everything because of my brainfog. I already forgot to tell the original adviser about my leg stiffness and I really hope this new adviser has the atos report. I will bring along my copy just in case. I just really hope I'm not forced to do things like work experience etc. When I feel I can cope with work situations, I will be doing everything I can, but doing too much causes major flares for me at the moment. It's just not worth the risk!
I will keep you updated on these appointments.
First Healthy Minds Counselling Appointment
TRIGGER WARNING: Mentions of suicidal thoughts and abortion.
On Wednesday I had my first counselling appointment with Healthy Minds. I had no idea what to expect to be honest. I'd been feeling pretty numb recently, trying to distract myself so I didn't think for too long, so I wasn't sure how to explain everything to the therapist. I thought about writing notes, but didn't know what to put, so I just went along and hoped my mind wouldn't let me down.
The therapist was really good. She asked me lots of questions but didn't rush me. It felt more like a chat I guess, although some things were hard to talk about. We covered so much and she kept me informed of everything.
We talked about my suicidal thoughts. I feel so bad talking about this because I end up doing it in such a matter of fact and calm way. I don't want people thinking I'm sick in the head or something. I know it's not healthy feeling this way and thinking about suicide as often as I do. I may not be planning to do anything (although, admittedly, I do come close sometimes) but it's always at the back of my mind. I don't really know how I'd do it. I told the therapist about the methods I've thought of but I was scared about being unsuccessful and ending up in agony in hospital getting my stomach pumped or something. It's something I think of as this option if things ever went absolutely tits up i.e. if I alienated more friends, family and/or realised just how hopeless my love-life was. I feel like I've lost so much already, but I know that I would hurt and upset and anger people even more if I went through with it. As much as I feel like a burden and a shit friend, I'd feel even guiltier if I ended it all. The feelings always get stronger when my symptoms are worse. Feeling sick to my stomach, weak, in pain all over, can't think straight, can't concentrate on a thing, have to cancel plans. When I feel that way, I can't do anything but think and then I have the horrible 'crashes'. It's just that option I think of when I just want everything to stop. If my life will never get better, I don't want that life. My parents go on holiday near the end of this month. Because of the thoughts and crashes and self loathing I have, I worry about being in the house on my own for this long (10 days). I had to just stop hiding it and tell the therapist that I worry about these thoughts and that I worry about getting so low I do plan out ending it all (I'm so so sorry guys, I know this is horrible but I have to be honest here!). I think that worried her to be honest. I don't think I'd do it. I'm not in the frame of mind right now where I would do it. But what if I get to a stage where I don't think about my friends, family, the future etc. What if this 'thought' is all I can think of? She said she wants to see me for an appointment during these 10 days. I think she wants to make sure I keep my moods up as much as I can so I can cope with being alone. She also said I need to try and make plans, have friends over etc. I will definitely try. Believe me, I don't want to have these horrible thoughts. It's just hard to control sometimes. I told the therapist how I rely on distractions.
We then talked about the abortion. I actually shudder when I say or read that word. It just sounds so abrupt and it drips with stigma. I couldn't think straight when I was explaining it to her. I was trying to explain how I needed to get closure and to stop feeling guilty. I feel so guilty and selfish for doing it because I wasn't so ill that carrying a child to full term would be too difficult to cope with. I know people who have had children at young ages and they are brilliant mothers. Maybe I felt like I'd taken the coward's way out? I made the decision so so quickly. I was young, irresponsible (I drank a lot and very often), all I wanted to do at the time was be young, but finish my education and stick to my plans. I wanted to do everything for 'me' I guess. This is why I felt selfish. It wasn't this baby's fault that I wasn't ready for him/her. But I was only 5 weeks pregnant at the time. The therapist asked me "What if you had had the baby?". When I talked through what my plans would be, I felt even worse because I felt that maybe I had made the wrong decision. I've always wanted to be a mother. Hindsight is a real bitch isn't it? It's bringing me to tears pouring my heart out here. All my deepest darkest thoughts out there. Keeping them bottled up just eats me up inside though.
The therapist said that she would refer me to a bereavement counsellor. That set me off again. The word bereavement. She said she felt that I'd never had time to grieve. I suppose I haven't really. I went through all this literally days before my first year exams and I never even told my university about it. I went to my appointments, took the pills that made everything happen and took the strong codeine to help with the pain. I brought my little box of codeine to my exams, sat at the back, held my stomach, grit my teeth and got on with it. I had to throw myself into my studies as much as possible so I couldn't think about this. I had to push every single emotion right down so it couldn't break me.
We then turned to the computer to do all the depression, anxiety and phobia questions again. To see how things had changed since my triage appointment. Beforehand, my depression score was so high that the therapist said antidepressants would have been needed alongside the counselling. Now I am in the moderate/severe depression category. I told her I didn't want anti-depressants because they didn't suit me before. They made it even harder to think clearly and not being able to access my thoughts scared me. So talking therapy it is. We had a look at my anxiety score and I think that one had gone down a bit as well. The anxiety is mainly due to my overactive bladder. I worry so much about situations that do not make it easy to access a toilet. We need to work on this, and I need to be more assertive in those situations. I told her about the lack of a toilet in the jobcentre, and how this made me have panic attacks. It caused me to be sanctioned, as I would get very ill just before my jobcentre appointments and would have panic attacks so bad I couldn't got to any group sessions. And this was back when I thought I was well enough to work!
The phobia section hadn't really changed. I have had a phobia of wasps for a long time. I'm not sure how I got it. I used to be a bit scared of wasps but it didn't affect going outside or eating/drinking outside when it's sunny. Nowadays I will avoid anywhere I can see even just one little wasp. My blood runs cold if one goes near me and I feel really faint for a while afterwards.
Ok so, at the end of this appointment she gave me some 'homework' to complete over the next fortnight. I have to keep a 7 day diary of what I did and how I felt on a scale of 0-8. I also have to write down what I do/plan in those 10 days. She seems really lovely and supportive. She's also sending me some breathing exercises and a relaxation CD as the nights tend to be the worst for me and I want to sleep better/earlier.
I will keep you all updated :)
Friday, 6 September 2013
Appointments, appointments, appointments
Sorry! I've been a bit naff with my blog again. I hope everyone got a chance to see my last post about the Very Important Petition! There's only around 5180 (I think) signatures and at least 95'000 more needed. I really believe in this cause. We don't want more horror stories.
Ok so I've had my atos assessment now, it was what I expected. Lots and lots of questions, my every move watched and scrutinised and me going out of the room convinced they'd find me fit for work because of the nurse's behaviour. I requested the report, just in case. I was all geared up to appeal and found many discrepancies, contradictions and downright lies on the report. One thing I was happy about, was that she wrote down exactly what I said. So that was the one honest thing. Thing was she put that I'd walked (with a stick) 150 yards from my dad's car to the assessment centre. What she failed to put down was that I was hobbling and had to stop a few times and lean on a wall because I was breathless and felt like my legs were going to go from under me. It was exhausting. She also lied on the physical; saying I was able to bend more than halfway when she asked me to try and touch my toes. What actually happened was that I bent very very slightly then cried out in pain (neck and back were killing) and had to refuse to continue. The contradiction on the report was that she said, in one section, that I had to get up 3 times during the assessment (truth) and in another section, she put that I sat still for the whole hour (couldn't be further from the truth!).
Well clearly the decision maker spotted the errors as I was put in the Work Related Activity Group and put as not fit for work. I was wondering about appealing to go in the support group but I'm really not sure. I guess I'll see how I go with these work focused interviews (first one is next week). Ok so I'm pretty happy about that. I'm getting the money I need and I'm not being forced into work before I'm ready.
Ooh also, I've had my first Healthy Minds assessment appointment come through. It didn't say CBT or anything, just that I'd be assessed to see if this service is right for me? Well, it'll be interesting to see how that goes anyway. That's also next week (busy week!) so I'll let you guys know what happens.
Lastly, I had my Rheumatology appointment yesterday. I spent the other night very awake, looking in support groups, forums etc, to find out what the first rheumy appointment is like for people with suspected Fibromyalgia. There were mixed reviews and the main advice was to keep a symptom diary; which I did.
I got there just on time and the nurse called me through to do height, weight, blood pressure (140/60 I think it said, that's the most abnormal my bp's ever been lol) give a urine sample etc. I swear it is SO hard to 'go' when a) you have to do it in a tube and b) there's two nurses gossiping outside the cubicle grr!
Straight after that, the doctor called me in (I know right! No huge wait!). The nurse popped in and I overheard her saying there was protein in my urine. Anyone know what that means? Is it a bad thing or pretty normal? I'd only had a cuppa that day lol.
Anyway, he asked me about my symptoms and my brain fog decided to kick in big time then haha. So frustrating! I'm glad I had everything written down though. I explained everything (maybe not in a fluent way but still) and he got me to pop onto the couch. He did all the neuro tests and muscle strength tests. Aw there was a funny moment though. He gestured to me "do this" *does chicken impression, with the elbows out and turned up* (can't explain it better than that sorry!), so I did that. Then he pressed down on my elbows so I naturally but my arms down a bit. Then he did the gesture again. This happened about 3 times before I had it explained to me that I had to push against his hands lmao! Good job he was a nice doctor with an actual sense of humour!
He did the tender point test as well. Basically, with fibromyalgia, you're supposed to have between 11 and 18 tender points on certain parts of your body (hips, shoulders, neck, back etc). By 'tender' I mean it hurts more than usual to touch. I don't know how many I had but it was a lot more than I expected. The most tender points were my neck and shoulders. It felt like they were permanently bruised. Ugh he got that reflex hammer thingy out as well! Started tapping my knees and elbows with it. Felt like I was being beaten up lol!
He asked me a few more questions about medical history, to which I answered that my dad has arthritis. After that he told me he thinks it has to be Fibromyalgia but he also wanted to order blood tests to check for autoimmune conditions, arthritis, thyroid problems etc. I think he even wanted to check for diabetes? Bit random. He said to stay on the tablets my GP prescribes as he thinks it's correct. I know the pregabalin is doing naff all for me and I'm getting side effects now, so I'm going to see her soon and see if I can try a different med. He also noted my Vitamin D dosage down and said I'm on a very high dose and, looking at my last Vitamin D blood results, I should be on a much lower dose now. I wouldn't mind at all with that!
Apart from that, he said he wouldn't do a follow up appointment as there's not much that can be done for fibro (meh, I hate having this illness!!) but he is referring me for Graded Exercise Therapy. I'm not sure what to think about this. I mean, I've heard it makes some M.E/Fibro patients worse? But the thing is, I'm at a point where I'm happy to try anything so who knows? If it does work for me then I'll be over the moon! And if not, well, I can always stop. He also handed me a little fibromyalgia booklet. It's pretty disheartening; seeing all the pictures of the elderly people in the booklet. I'm not a pensioner! Many many young people have fibromyalgia. It's a booklet created by Arthritis Research UK. Is this illness seen as related to Arthritis? I suppose some of the symptoms are very similar (stiffness etc).
Ok so, I had my bloods done (at least 4 tubes I think, possibly 5) and now I've 'officially' had my diagnosis. It seems that diagnoses are only taken seriously when done by a specialist.
It's been a day since my appointment and I still feel all bruised and sore. I'm absolutely exhausted as well. Having a huge energy drink again. I shouldn't really but I didn't want to sleep all day. Want to at least try and be productive even if that productivity just involves replying to messages. I've still got things to catch up on!
I cannot wait to start seeing the counsellor. I feel like I need to see them straightaway sometimes. The nights are always the worst for me. It's that time when I'm by myself, most people are in bed so I'm not really messaging anyone, so I end up thinking about everything. I have a very cruel mind. I can be so self loathing sometimes. Especially when it comes to things I've achieved in my life time and the way I look. Up until this year, I never really had a problem with my weight. I didn't think too much about calories or trans fats or carbs. I'm still pretty crap at watching what I eat but now I feel incredibly guilty if I eat something fatty or sugary. I don't like how my body looks, even though people say I look fine. I just see the extra wobbly bits. Not that I'd start to think that about anyone else. I believe your ideal weight is the weight you feel happiest and most comfortable at. Unfortunately I can't feel happy at this weight. Maybe this Graded Exercise Therapy will help a bit? We're trying to get in more fruit and veg and I'm eating less bread and cheesy pasta.
Sorry, I went off on a bit of a tangent then! Anyway, so I'll be glad when I can talk to the counsellor, get things off my chest and find ways of being more accepting and happy with myself. I used to be an optimist I swear!
Ok, so I'll leave this here and I WILL finish that damn review when I'm feeling more with it. Thanks again for reading :)
Ok so I've had my atos assessment now, it was what I expected. Lots and lots of questions, my every move watched and scrutinised and me going out of the room convinced they'd find me fit for work because of the nurse's behaviour. I requested the report, just in case. I was all geared up to appeal and found many discrepancies, contradictions and downright lies on the report. One thing I was happy about, was that she wrote down exactly what I said. So that was the one honest thing. Thing was she put that I'd walked (with a stick) 150 yards from my dad's car to the assessment centre. What she failed to put down was that I was hobbling and had to stop a few times and lean on a wall because I was breathless and felt like my legs were going to go from under me. It was exhausting. She also lied on the physical; saying I was able to bend more than halfway when she asked me to try and touch my toes. What actually happened was that I bent very very slightly then cried out in pain (neck and back were killing) and had to refuse to continue. The contradiction on the report was that she said, in one section, that I had to get up 3 times during the assessment (truth) and in another section, she put that I sat still for the whole hour (couldn't be further from the truth!).
Well clearly the decision maker spotted the errors as I was put in the Work Related Activity Group and put as not fit for work. I was wondering about appealing to go in the support group but I'm really not sure. I guess I'll see how I go with these work focused interviews (first one is next week). Ok so I'm pretty happy about that. I'm getting the money I need and I'm not being forced into work before I'm ready.
Ooh also, I've had my first Healthy Minds assessment appointment come through. It didn't say CBT or anything, just that I'd be assessed to see if this service is right for me? Well, it'll be interesting to see how that goes anyway. That's also next week (busy week!) so I'll let you guys know what happens.
Lastly, I had my Rheumatology appointment yesterday. I spent the other night very awake, looking in support groups, forums etc, to find out what the first rheumy appointment is like for people with suspected Fibromyalgia. There were mixed reviews and the main advice was to keep a symptom diary; which I did.
I got there just on time and the nurse called me through to do height, weight, blood pressure (140/60 I think it said, that's the most abnormal my bp's ever been lol) give a urine sample etc. I swear it is SO hard to 'go' when a) you have to do it in a tube and b) there's two nurses gossiping outside the cubicle grr!
Straight after that, the doctor called me in (I know right! No huge wait!). The nurse popped in and I overheard her saying there was protein in my urine. Anyone know what that means? Is it a bad thing or pretty normal? I'd only had a cuppa that day lol.
Anyway, he asked me about my symptoms and my brain fog decided to kick in big time then haha. So frustrating! I'm glad I had everything written down though. I explained everything (maybe not in a fluent way but still) and he got me to pop onto the couch. He did all the neuro tests and muscle strength tests. Aw there was a funny moment though. He gestured to me "do this" *does chicken impression, with the elbows out and turned up* (can't explain it better than that sorry!), so I did that. Then he pressed down on my elbows so I naturally but my arms down a bit. Then he did the gesture again. This happened about 3 times before I had it explained to me that I had to push against his hands lmao! Good job he was a nice doctor with an actual sense of humour!
He did the tender point test as well. Basically, with fibromyalgia, you're supposed to have between 11 and 18 tender points on certain parts of your body (hips, shoulders, neck, back etc). By 'tender' I mean it hurts more than usual to touch. I don't know how many I had but it was a lot more than I expected. The most tender points were my neck and shoulders. It felt like they were permanently bruised. Ugh he got that reflex hammer thingy out as well! Started tapping my knees and elbows with it. Felt like I was being beaten up lol!
He asked me a few more questions about medical history, to which I answered that my dad has arthritis. After that he told me he thinks it has to be Fibromyalgia but he also wanted to order blood tests to check for autoimmune conditions, arthritis, thyroid problems etc. I think he even wanted to check for diabetes? Bit random. He said to stay on the tablets my GP prescribes as he thinks it's correct. I know the pregabalin is doing naff all for me and I'm getting side effects now, so I'm going to see her soon and see if I can try a different med. He also noted my Vitamin D dosage down and said I'm on a very high dose and, looking at my last Vitamin D blood results, I should be on a much lower dose now. I wouldn't mind at all with that!
Apart from that, he said he wouldn't do a follow up appointment as there's not much that can be done for fibro (meh, I hate having this illness!!) but he is referring me for Graded Exercise Therapy. I'm not sure what to think about this. I mean, I've heard it makes some M.E/Fibro patients worse? But the thing is, I'm at a point where I'm happy to try anything so who knows? If it does work for me then I'll be over the moon! And if not, well, I can always stop. He also handed me a little fibromyalgia booklet. It's pretty disheartening; seeing all the pictures of the elderly people in the booklet. I'm not a pensioner! Many many young people have fibromyalgia. It's a booklet created by Arthritis Research UK. Is this illness seen as related to Arthritis? I suppose some of the symptoms are very similar (stiffness etc).
Ok so, I had my bloods done (at least 4 tubes I think, possibly 5) and now I've 'officially' had my diagnosis. It seems that diagnoses are only taken seriously when done by a specialist.
It's been a day since my appointment and I still feel all bruised and sore. I'm absolutely exhausted as well. Having a huge energy drink again. I shouldn't really but I didn't want to sleep all day. Want to at least try and be productive even if that productivity just involves replying to messages. I've still got things to catch up on!
I cannot wait to start seeing the counsellor. I feel like I need to see them straightaway sometimes. The nights are always the worst for me. It's that time when I'm by myself, most people are in bed so I'm not really messaging anyone, so I end up thinking about everything. I have a very cruel mind. I can be so self loathing sometimes. Especially when it comes to things I've achieved in my life time and the way I look. Up until this year, I never really had a problem with my weight. I didn't think too much about calories or trans fats or carbs. I'm still pretty crap at watching what I eat but now I feel incredibly guilty if I eat something fatty or sugary. I don't like how my body looks, even though people say I look fine. I just see the extra wobbly bits. Not that I'd start to think that about anyone else. I believe your ideal weight is the weight you feel happiest and most comfortable at. Unfortunately I can't feel happy at this weight. Maybe this Graded Exercise Therapy will help a bit? We're trying to get in more fruit and veg and I'm eating less bread and cheesy pasta.
Sorry, I went off on a bit of a tangent then! Anyway, so I'll be glad when I can talk to the counsellor, get things off my chest and find ways of being more accepting and happy with myself. I used to be an optimist I swear!
Ok, so I'll leave this here and I WILL finish that damn review when I'm feeling more with it. Thanks again for reading :)
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