Friday 11 October 2013

World Mental Health Day and the Importance of Support

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."

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: - 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. - 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. - Another brilliant mental health charity. This charity does a lot of campaigning and fundraising.

And finally Healthy Minds - 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 "The day I opened up about my Mental Health" 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 :)

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)

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:

  1. Get a psychology degree
  2. Get a masters degree in Clinical Psychology
  3. Get a job in an office, build up experience
  4. Get into an NHS job
  5. Get mental health, clinical experience
  6. Get a Clinical Psychology Doctorate
  7. Do my Psychology training
  8. Become a Clinical Psychologist
  9. Get married
  10. Own a house
  11. Have children
  12. 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:

  1. Walk to a shop by myself
  2. Meet up with friends more often (maybe once a week even?)
  3. Take a longer journey by myself
  4. Get onto medication which helps my symptoms
  5. Take more control of my mental health
  6. Be well enough to cope with a relationship again
  7. 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.