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.
Wednesday, 18 September 2013
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 :)
Tuesday, 20 August 2013
A Very Important Petition: Please Sign!!
I want to start off by telling you a little bit about the benefits this petition refers to, and the process you would go through in order to claim and be assessed for them.
Employment and Support Allowance (ESA)
This is an out-of-work benefit for people with illnesses and/or disabilities which prevent them from working. If you were originally on Incapacity Benefit, this is what you would usually be transitioned onto and reassessed for. In order to claim, you will need to fill in an initial form to give information about your illness/disability, your circumstances at home, personal details etc. This is the ESA1. Your information is then assessed and you will initially be told if you qualify for the assessment rate of the benefit (usually the equivalent amount to Jobseekers' Allowance). After this, you will receive a questionnaire to see how your illness/disability affects your daily living, ability to work, care for yourself etc. Most claimants will be called for a face to face assessment and a very small amount will qualify for a home visit. It all depends on how ill/disabled you are. It tends to be very rare (more so than it should be), but in some cases, you may not need an assessment. Soon after this, you are told whether you are Fit For Work, in the Work Related Activity Group or in the Support Group.
This link gives more information: https://www.gov.uk/employment-support-allowance/what-youll-get
Disability Living Allowance (Soon to become Personal Independence Payment)
If you need to apply for this then I think you can only apply for Personal Independence Payment. Check this link for more details: https://www.gov.uk/pip-checker
DLA/PIP can be in or out of work benefits. They are designed to try and help with costs related to your illness/disability. You may also qualify for a car on the Motability scheme, if your mobility is poor enough. A lot of people rely on this as, without it, they may not be able to access work. Similarly to ESA, you need to send information to the DWP about your illness/disability and how it affects different parts of your life. You may also need to have a face to face assessment.
------------------------------------------------------------------------------------
Although these benefits do call for medical evidence about your illness/disability, in order to assess you, the outcome of the assessment is mostly based upon what you or your carer tells them. The assessments can be terrifying for some people and fully explaining the impact of your illness/disability can be practically impossible.
I want to introduce you to a petition that absolutely NEEDS more signatures. It calls for the DWP to send out a form to all claimants deemed "Vulnerable". This could be due to severe physical illness, mental illness, learning disabilities etc. This form would be provided for the claimant to send to their GP or consultant; asking them to fill in to provide information if the DWP rules 29 and 35 apply to their patient. (I will explain these rules at the end of this post)*.
The point of this form is to safeguard the claimant and protect them against needless stressful face to face assessments if these would, in fact, be detrimental to their health. The evidence given by GPs and consultants should be enough to fully assess them.
This is the link: http://epetitions.direct.gov.uk/petitions/47554 **
Please please please sign. It is extremely important!
* -Regulation 29 applies to Limited Capability for Work and Exceptional Circumstances related to this: http://www.legislation.gov.uk/uksi/2008/794/regulation/29/made
-Regulation 35 applies to Limited Capability for Work Related Activity and Exceptional Circumstances related to this: http://www.legislation.gov.uk/uksi/2008/794/regulation/35/made
**Special mention to Lynn; who created this fantastic petition. If you would like to learn more about Lynn, her son's story and how the petition came about, then you can find her on twitter (@SignSaveLives)
Thanks in advance!
Employment and Support Allowance (ESA)
This is an out-of-work benefit for people with illnesses and/or disabilities which prevent them from working. If you were originally on Incapacity Benefit, this is what you would usually be transitioned onto and reassessed for. In order to claim, you will need to fill in an initial form to give information about your illness/disability, your circumstances at home, personal details etc. This is the ESA1. Your information is then assessed and you will initially be told if you qualify for the assessment rate of the benefit (usually the equivalent amount to Jobseekers' Allowance). After this, you will receive a questionnaire to see how your illness/disability affects your daily living, ability to work, care for yourself etc. Most claimants will be called for a face to face assessment and a very small amount will qualify for a home visit. It all depends on how ill/disabled you are. It tends to be very rare (more so than it should be), but in some cases, you may not need an assessment. Soon after this, you are told whether you are Fit For Work, in the Work Related Activity Group or in the Support Group.
This link gives more information: https://www.gov.uk/employment-support-allowance/what-youll-get
Disability Living Allowance (Soon to become Personal Independence Payment)
If you need to apply for this then I think you can only apply for Personal Independence Payment. Check this link for more details: https://www.gov.uk/pip-checker
DLA/PIP can be in or out of work benefits. They are designed to try and help with costs related to your illness/disability. You may also qualify for a car on the Motability scheme, if your mobility is poor enough. A lot of people rely on this as, without it, they may not be able to access work. Similarly to ESA, you need to send information to the DWP about your illness/disability and how it affects different parts of your life. You may also need to have a face to face assessment.
------------------------------------------------------------------------------------
Although these benefits do call for medical evidence about your illness/disability, in order to assess you, the outcome of the assessment is mostly based upon what you or your carer tells them. The assessments can be terrifying for some people and fully explaining the impact of your illness/disability can be practically impossible.
I want to introduce you to a petition that absolutely NEEDS more signatures. It calls for the DWP to send out a form to all claimants deemed "Vulnerable". This could be due to severe physical illness, mental illness, learning disabilities etc. This form would be provided for the claimant to send to their GP or consultant; asking them to fill in to provide information if the DWP rules 29 and 35 apply to their patient. (I will explain these rules at the end of this post)*.
The point of this form is to safeguard the claimant and protect them against needless stressful face to face assessments if these would, in fact, be detrimental to their health. The evidence given by GPs and consultants should be enough to fully assess them.
This is the link: http://epetitions.direct.gov.uk/petitions/47554 **
Please please please sign. It is extremely important!
* -Regulation 29 applies to Limited Capability for Work and Exceptional Circumstances related to this: http://www.legislation.gov.uk/uksi/2008/794/regulation/29/made
-Regulation 35 applies to Limited Capability for Work Related Activity and Exceptional Circumstances related to this: http://www.legislation.gov.uk/uksi/2008/794/regulation/35/made
**Special mention to Lynn; who created this fantastic petition. If you would like to learn more about Lynn, her son's story and how the petition came about, then you can find her on twitter (@SignSaveLives)
Thanks in advance!
Wednesday, 31 July 2013
My Healthy Minds Triage Appointment/Opening up
Slowly, I feel like this metaphorical weight is being lifted from my shoulders.
I had my telephone triage appointment today with Healthy Minds, this was to address my mental health. I was so nervous about it. I found it really difficult opening up to my gp, so I thought it'd be even worse with this person I didn't know. It actually wasn't.
When my appointment letter came through, it was accompanied by a questionnaire to address things such as Daily Living, Anxiety, Phobias and Low Mood. By each question, I had to score either how severely, or how often this issue affects me/is affected by my mental health. Obviously some of the points (like work, sleep problems, being able to socialise, lack of energy) I had to annotate as they are partly (or severely) affected by my physical illness too. I had to get this ready for today; when I was due to have my triage appointment.
The phonecall came dead on time and I spoke to a really friendly sounding Psychological Therapist. She explained things such as confidentiality, health and safety etc then we went onto the scores. I explained about my Fibromyalgia and Overactive Bladder and she was very understanding; knowing to take this into consideration with some of my responses.
I took a deep breath when discussing my score for the last question: "Thoughts that you would be better off dead or of hurting yourself in some way". I'd scored that a 3, i.e. "Nearly every day". Obviously we had to talk about that in greater detail but she was very understanding and we had a really good chat about that. I'd not attempted suicide or actively planned to. I'd been close on really bad days though.
It's great that I can talk to some friends and family about this but I know I worry them too. If a friend or family member of mine was talking about this with me, I'd be as supportive as possible but it is so hard to be impartial as it would affect me and I'd be very upset that I couldn't help much. The therapist doesn't know me so we were able to talk about this in a matter of fact way and really get to grips with what makes me feel that extremely. She asked me what my strongest feeling was, and I said "Guilt". It's the guilt from my physical health declining so much and making me feel as if I am a burden to my family and friends. Those around me have to make a lot more effort to see me. Some understand, some never will and I have to accept that I can't always change that. Also, I can't help around the house as much as I'd like to. We could probably really benefit from having extra help round the house, but I doubt our needs would be seen as urgent or serious enough so we just have to carry on as best as possible.
We then went on to things I do in order to cheer me up. I talked about this blog, talking to loved ones and music. I guess sometimes this blog is like a journal to me. It's out there for everyone to see but the point is that I want to be more open about my physical and mental illnesses. There's no shame in it and if anyone has a problem with me being this open, frankly they can go swivel lol! It helps. I have got to know people more, through this. I have become closer to people as well so I would never regret writing this blog. The music is a great way to get creative. Sometimes (very rarely!) I can write lyrics. They usually end up as half finished songs but I always feel better after getting them down. I play flute, keyboard and guitar as well. I haven't got them out in a while but I'm working on it. I'd like to write a full song incorporating at least some of these instruments. Lastly, I enjoy singing. Apparently I sound good, although I'm very critical of my own voice. I didn't mention the baking but I enjoy that too! A lot of the time I will need help but to create something tasty is a real mood booster sometimes. I call it Baking Therapy.
*After this, she asked if there was anything else that I feel was having an impact on my mental health. Now this one was difficult. I've really been umming and ahhing about even mentioning it in this blog. I'm not sure who reads it and I certainly don't want to end up a topic of gossip but the whole point of this blog was to open up. Maybe I should just say? Ok, well I guess this has had an impact on my mental health to a certain degree because it's something I never really got closure from, it happened very quickly and I just had to 'get on with it'. When I was 19, and nearing the end of my first year at university, I found out I was pregnant. I'd not long broken up with the father and definitely didn't feel old enough to have children. Let me just say that I didn't feel that way about other people I knew who had children young! This is a personal thing. So I was close to my exams, felt really panicked and rushed so made the hasty decision to have a medical abortion. God this is so hard to talk about!! I can probably count on one hand the amount of people who actually knew about this. It was a really traumatic experience and I felt like I had to keep it private and just get on with my degree. I didn't talk to anyone in great detail about it. I had an amazing, AMAZING friend who took me to the appointments, was always there when I needed her and kept my secret. She really is a friend for life, I owe her so much. The nurses were honestly horrible. No support, just acting like I was a stupid teenager who got herself pregnant. It was protected for god's sake. Anyway, I wasn't offered any counselling, even though it was pretty obvious that I needed it. The whole time I was in tears, shaking. Anyway, so I went, had this done, didn't even tell my personal tutor about it and got on with my exams. It was pretty clear that this had an impact on my grades as I suffered a good couple of weeks of agonising pain. I had to just take my codeine, turn up and grit my teeth. I got through it though! And managed to pass my degree even though it was very difficult with all this going round my head. To this day I feel like I never got closure from this experience. I always wondered whether I made the decision too quickly, was I selfish for doing this? I also hope that this wasn't my only chance to have children. These are the things I need to address and get closure from.
Back to the phonecall. It was an amazing chat, she was so patient and understanding. We even spoke about my degree and how I'd like a similar job to her in the future! Although I was crying after, I did feel a bit better for getting this out. We then discussed the therapy options for me.
There's actually a therapy program for people like me, who have an ongoing physical illness that is now having an impact on my mental health. It's called the Expert Patient Programme. It'll be group sessions but I guess they'll be understanding of my physical needs (like being able to go to the toilet whenever I need to). Plus I want to push myself to be more comfortable in group situations. If I can do this, then I consider it a big personal achievement. Also, I'm being referred for one to one Cognitive Behavioural Therapy sessions. Although I've been open about it on my blog (and very nervous about what response I'll get now!) it's still something I need to discuss privately, alongside other feelings etc.
So that's the next step! I thought it'd be a lot more difficult to access the help but I actually feel supported in all this. I'm not miraculously cured and this is only the beginning of the journey, but it's a big step to take. And it wasn't as scary as I thought :)
Right, I need to eat now so must go! Thanks again to all my readers :)
*I'm really tempted to delete this part. I just don't know. It was such a private thing in my past but I suppose I have to be open about it so I will try and leave it here. Feeling so anxious right now!
I had my telephone triage appointment today with Healthy Minds, this was to address my mental health. I was so nervous about it. I found it really difficult opening up to my gp, so I thought it'd be even worse with this person I didn't know. It actually wasn't.
When my appointment letter came through, it was accompanied by a questionnaire to address things such as Daily Living, Anxiety, Phobias and Low Mood. By each question, I had to score either how severely, or how often this issue affects me/is affected by my mental health. Obviously some of the points (like work, sleep problems, being able to socialise, lack of energy) I had to annotate as they are partly (or severely) affected by my physical illness too. I had to get this ready for today; when I was due to have my triage appointment.
The phonecall came dead on time and I spoke to a really friendly sounding Psychological Therapist. She explained things such as confidentiality, health and safety etc then we went onto the scores. I explained about my Fibromyalgia and Overactive Bladder and she was very understanding; knowing to take this into consideration with some of my responses.
I took a deep breath when discussing my score for the last question: "Thoughts that you would be better off dead or of hurting yourself in some way". I'd scored that a 3, i.e. "Nearly every day". Obviously we had to talk about that in greater detail but she was very understanding and we had a really good chat about that. I'd not attempted suicide or actively planned to. I'd been close on really bad days though.
It's great that I can talk to some friends and family about this but I know I worry them too. If a friend or family member of mine was talking about this with me, I'd be as supportive as possible but it is so hard to be impartial as it would affect me and I'd be very upset that I couldn't help much. The therapist doesn't know me so we were able to talk about this in a matter of fact way and really get to grips with what makes me feel that extremely. She asked me what my strongest feeling was, and I said "Guilt". It's the guilt from my physical health declining so much and making me feel as if I am a burden to my family and friends. Those around me have to make a lot more effort to see me. Some understand, some never will and I have to accept that I can't always change that. Also, I can't help around the house as much as I'd like to. We could probably really benefit from having extra help round the house, but I doubt our needs would be seen as urgent or serious enough so we just have to carry on as best as possible.
We then went on to things I do in order to cheer me up. I talked about this blog, talking to loved ones and music. I guess sometimes this blog is like a journal to me. It's out there for everyone to see but the point is that I want to be more open about my physical and mental illnesses. There's no shame in it and if anyone has a problem with me being this open, frankly they can go swivel lol! It helps. I have got to know people more, through this. I have become closer to people as well so I would never regret writing this blog. The music is a great way to get creative. Sometimes (very rarely!) I can write lyrics. They usually end up as half finished songs but I always feel better after getting them down. I play flute, keyboard and guitar as well. I haven't got them out in a while but I'm working on it. I'd like to write a full song incorporating at least some of these instruments. Lastly, I enjoy singing. Apparently I sound good, although I'm very critical of my own voice. I didn't mention the baking but I enjoy that too! A lot of the time I will need help but to create something tasty is a real mood booster sometimes. I call it Baking Therapy.
*After this, she asked if there was anything else that I feel was having an impact on my mental health. Now this one was difficult. I've really been umming and ahhing about even mentioning it in this blog. I'm not sure who reads it and I certainly don't want to end up a topic of gossip but the whole point of this blog was to open up. Maybe I should just say? Ok, well I guess this has had an impact on my mental health to a certain degree because it's something I never really got closure from, it happened very quickly and I just had to 'get on with it'. When I was 19, and nearing the end of my first year at university, I found out I was pregnant. I'd not long broken up with the father and definitely didn't feel old enough to have children. Let me just say that I didn't feel that way about other people I knew who had children young! This is a personal thing. So I was close to my exams, felt really panicked and rushed so made the hasty decision to have a medical abortion. God this is so hard to talk about!! I can probably count on one hand the amount of people who actually knew about this. It was a really traumatic experience and I felt like I had to keep it private and just get on with my degree. I didn't talk to anyone in great detail about it. I had an amazing, AMAZING friend who took me to the appointments, was always there when I needed her and kept my secret. She really is a friend for life, I owe her so much. The nurses were honestly horrible. No support, just acting like I was a stupid teenager who got herself pregnant. It was protected for god's sake. Anyway, I wasn't offered any counselling, even though it was pretty obvious that I needed it. The whole time I was in tears, shaking. Anyway, so I went, had this done, didn't even tell my personal tutor about it and got on with my exams. It was pretty clear that this had an impact on my grades as I suffered a good couple of weeks of agonising pain. I had to just take my codeine, turn up and grit my teeth. I got through it though! And managed to pass my degree even though it was very difficult with all this going round my head. To this day I feel like I never got closure from this experience. I always wondered whether I made the decision too quickly, was I selfish for doing this? I also hope that this wasn't my only chance to have children. These are the things I need to address and get closure from.
Back to the phonecall. It was an amazing chat, she was so patient and understanding. We even spoke about my degree and how I'd like a similar job to her in the future! Although I was crying after, I did feel a bit better for getting this out. We then discussed the therapy options for me.
There's actually a therapy program for people like me, who have an ongoing physical illness that is now having an impact on my mental health. It's called the Expert Patient Programme. It'll be group sessions but I guess they'll be understanding of my physical needs (like being able to go to the toilet whenever I need to). Plus I want to push myself to be more comfortable in group situations. If I can do this, then I consider it a big personal achievement. Also, I'm being referred for one to one Cognitive Behavioural Therapy sessions. Although I've been open about it on my blog (and very nervous about what response I'll get now!) it's still something I need to discuss privately, alongside other feelings etc.
So that's the next step! I thought it'd be a lot more difficult to access the help but I actually feel supported in all this. I'm not miraculously cured and this is only the beginning of the journey, but it's a big step to take. And it wasn't as scary as I thought :)
Right, I need to eat now so must go! Thanks again to all my readers :)
*I'm really tempted to delete this part. I just don't know. It was such a private thing in my past but I suppose I have to be open about it so I will try and leave it here. Feeling so anxious right now!
Monday, 22 July 2013
The Second Step
As you well know, I've recently begun opening up about my own mental health. I couldn't deny it anymore. I know all this has been triggered by my fibromyalgia getting worse and being chronically ill for so long. It has had an impact on every single part of my life. I've lost friends because of it, had to give up working, given up cheerleading during uni, can't continue my uni studies yet and socialising is very very rare. Everything I enjoy has become so difficult to keep a hold of. How could it not affect me emotionally/mentally? I hesitate to make plans with friends because I never know when I'm going to have a really ill day. I hate letting people down last minute.
Anyway, the fact is, I can't ignore the mental and emotional symptoms. They are affecting me just as much as the physical symptoms, so need to be addressed sooner rather than later.
So, I went to my GP (see my previous post for more info). It took every bit of courage I had left. I call this blog "The Second Step" because the first step, to addressing my mental health, was to approach my GP.
I was given a card with contact details for a self referral counselling service called "Healthy Minds". The card is called the "Ticket to: RECOVERY". Very positive hehe. Well I've had this card for at least a week now I think? Probably longer. What you're supposed to do is ring the number on the card and they assess your needs. Talking about my feelings face to face with my doctor (who I see fairly regularly) was difficult enough, but talking on the phone (which I hate doing anyway, get incredibly anxious) opening up to a complete stranger would be ten times worse.
I finally rang the number today. I've not long been off the phone actually. It's just, I woke up feeling so down, so hopeless, completely rock bottom. I felt that if I didn't ring the number to access some help, I would completely break down and do something stupid. I've sure thought about it enough.
I wrote down some notes in no order at all. This was to help prompt me. Then I rang the number. I was shaking and close to tears at this point. Had no idea what to expect. The first person to answer was like a general receptionist I think. She told me the phonecall would take about 10 mins and was I happy to continue? Then she took my contact details, address etc and put me through to a woman who was to book an appointment for me. I had my calendar ready. The appointment booking woman asked me a few equality questions (ethnicity, religion, sexuality, disability level). I took the opportunity to mention the fibromyalgia. She asked for my home number as well. The brain fog decided to surface then (thanks fibro!) so it took me a minute to remember it! She was very patient though and took my details no problem.
She then told me that what would happen next was that I would have a phone triage appointment booked for me. It would take 30 minutes. So we booked it for 11.30am on 31st July (the day after my atos appointment, so I'm going to need it!*)
So once that was sorted, that was pretty much it for the phonecall. I thought I'd have to talk about all my feelings over the phone right there and then, but no! That was it! I suppose it would help keep the phonebill down too. I rang on my mobile (the landline volume is ridiculously low and my hearing's not so good).
I thought I would write a blog post about this Healthy Minds service for anyone who has been referred to it and isn't sure what to expect :) I will write about the next step at the end of this month. I want this blog to describe my journey through mental illness as well as my mystery physical illness (well, it's still not 100% diagnosed).
Thanks for reading :)
*Ah yes. I don't think I mentioned the Atos appointment! Well they cancelled on me a while ago, re-booked for this month and, when I turned up for the assessment (in good time too!), I found out they'd cancelled that one too! Only they hadn't bothered telling me beforehand. The receptionist gave me a very halfhearted "sorry" and told me I'd get a letter for my rescheduled appointment. That cancellation/rescheduling letter came the day after my assessment. Very organised...
So yes, I experienced a massive flare up of my symptoms that day. I was bedbound for most of the day; not able to do much more than type quick messages back to friends and sleep. I think I've recovered (ish) from that now. Still in pain, still exhausted, still confused/forgetful, still feeling very very down and anxious, but able to get out of bed.
Thanks to everyone who has been so supportive of me. It means so much, I owe you everything.
Friday, 5 July 2013
The day I opened up about my Mental Health
Well I did it!
I finally spoke (honestly) about my declining mental health to my gp. I didn't think it'd be so difficult though. Ok, let's start at the beginning.
A few weeks ago I had my MRI and the radiographer (or assistant, I'm not sure) told me I would receive a letter within the next couple of weeks for an appointment with the doctor (the General Medical Practitioner) who sent me for the MRI (to discuss results etc). Fast forward a few weeks and I still hadn't received the letter. As my brain fog was so bad my mum rang the doctor's secretary for me to see what had happened about this appointment.
The reply annoyed me. First off, the MRI was clear (phew! In one way but annoying as invisible illness is still invisible) but, because of that, the doctor had decided to discharge me back to my GP with no follow ups or anything. Hmm, well the symptoms are still there, ruining my life, keeping me on ESA, making me feel TERRIFIED about my Atos appointment due to lack of evidence to show to prove that I am ill and it's not going away anytime soon.
You see, he'd originally said that he'd get the MRI booked and (at the same time) would refer me to a Rheumatologist. He lied.
Ok so, mum booked an appointment with my GP as I'd have to get a referral through her. I'm guessing it will take ages to get a rheumy appointment now as the referral isn't being done directly through the hospital. I just want to get well enough to work! I don't want to be unemployed for years and years because that will make it so difficult to even get a job.
Anyway, fast forward to the GP appointment (Wednesday). I'd compiled a list of what I wanted to talk about. Firstly, the referral. Secondly, the Pregabalin dosage (not doing a damn thing to alleviate nerve pain). Thirdly (one I was hesitant about), my extremely low moods/suicidal thoughts.
I felt quite nervous on the day of my appointment. Probably more for the third thing than anything else. She has been really good with listening and considering things I want to be done. Obviously I listen to her advice too! It's just nice to know that your GP is a path to further care, not a barrier.
I swear I spoke far too quickly during my appointment. I didn't think I made a lot of sense either. I'd written down what I wanted to say but the brain fog was back and I couldn't get my words out as fluently as I would've liked. Somehow she made sense of what I said though.
She said she'd get the referral done straight away. I was very relieved about that. The specialist for Fibromyalgia is supposed to be a Rheumatologist as far as I've been told so hopefully I'll be getting someone with a lot of knowledge about it (hopefully).
She also upped my Pregabalin dose. I was originally on 50mg a night (2x25mg tablets). I'm now starting on 75mg a night, going up to 75mg in the morning and 75mg at night (150mg in total so dose is tripled!). This sounds more like the dose I should be on, so hopefully I'll notice some kind of difference.
I did mention my Atos assessment coming up as well. I really am nervous about it and have left it too late to ring up and ask about having the assessment recorded. Stupid me. I think I'll just have to bite the bullet and try to deal with whatever is thrown at me now. I know I'm not well enough to work. God knows I've tried to think about what kind of things I could cope with in the workplace in my current condition, to no avail. I am not a scrounger. I need that ESA and I do intend to apply for work once I feel I could cope, and that it won't make me worse. I know there's not much my GP could say, just to mention that I am still under investigation although Fibromyalgia is the diagnosis I have been given. I'm guessing I should show my hospital letters too to show that I'm being taken seriously...
Ok, so by that time the GP was asking if there was anything else I wanted to talk about. I nearly said 'no' but I took a deep breath and started to tell her about how I'd been feeling emotionally/mentally.
I said I'd been having some very very low moods but I wasn't sure if it was worth mentioning because some days I actually don't feel so bad. I try and keep myself busy; doing things I enjoy. It's just that, the thing is, once I've stopped doing the things I enjoy, my moods go very low again. I beat myself up mentally, feeling guilty and worthless and frustrated that I can't do the things I used to (socialising lots, working, earning money, travelling). I wondered whether the 'good'/ok/not so bad moods I had were because I was distracting myself. Not letting myself think even. It's just all getting very hard to cope with.
At this point I had managed to burst into tears. I was very apologetic about it too. I hate crying when I'm trying to explain important things. I always think of myself as an emotional person but I hate, hate, HATE showing that kind of emotion. I think of it as a weakness. I don't see it as a weakness if anyone else does it but only when I do it. I felt that I had opened this floodgate (literally!) once I had broken through and spoken about my mental health. I'd completely let the barrier down and was ready to face the consequences. It was a bit of a relief but also left me feeling vulnerable.
I explained that I hadn't been very honest about my mental health with previous GPs as I was worried that all my physical symptoms would be attributed to a mental health condition, the physical symptoms would stop being treated and I would be given a load of anti depressants/anti anxiety meds again. That would be a huge step back for me. I don't have a problem with people taking these meds if they truly do help. What would give me the right to have a problem with that anyway? It's just that I want to TALK. That is the best treatment for my mental health.
The GP was actually amazing. Before I even had to explain, she said she knew that it was the physical illness causing the mental illness and NOT the other way round. She understood that chronic physical pain often went hand in hand with conditions such as depression and anxiety. She actually ASKED me if I wanted to try some anti depressants or if I wanted to consider counselling. Through my tears, I nodded for counselling. She gave me a self referral number to put myself on the waiting list to see someone. I was very grateful and the appointment ended there.
It felt like a very successful and productive appointment. We must've gone over the 10 minute limit but she listened to me, she was understanding, helpful and patient. I don't think I've ever had that with a doctor before and I appreciated it so much. It feels like half the battle has been won, just to have a co-operative doctor.
So, the next step is to actually call this number. Something I'm hesitant to do (I know, I should call soon) for a few reasons:
I finally spoke (honestly) about my declining mental health to my gp. I didn't think it'd be so difficult though. Ok, let's start at the beginning.
A few weeks ago I had my MRI and the radiographer (or assistant, I'm not sure) told me I would receive a letter within the next couple of weeks for an appointment with the doctor (the General Medical Practitioner) who sent me for the MRI (to discuss results etc). Fast forward a few weeks and I still hadn't received the letter. As my brain fog was so bad my mum rang the doctor's secretary for me to see what had happened about this appointment.
The reply annoyed me. First off, the MRI was clear (phew! In one way but annoying as invisible illness is still invisible) but, because of that, the doctor had decided to discharge me back to my GP with no follow ups or anything. Hmm, well the symptoms are still there, ruining my life, keeping me on ESA, making me feel TERRIFIED about my Atos appointment due to lack of evidence to show to prove that I am ill and it's not going away anytime soon.
You see, he'd originally said that he'd get the MRI booked and (at the same time) would refer me to a Rheumatologist. He lied.
Ok so, mum booked an appointment with my GP as I'd have to get a referral through her. I'm guessing it will take ages to get a rheumy appointment now as the referral isn't being done directly through the hospital. I just want to get well enough to work! I don't want to be unemployed for years and years because that will make it so difficult to even get a job.
Anyway, fast forward to the GP appointment (Wednesday). I'd compiled a list of what I wanted to talk about. Firstly, the referral. Secondly, the Pregabalin dosage (not doing a damn thing to alleviate nerve pain). Thirdly (one I was hesitant about), my extremely low moods/suicidal thoughts.
I felt quite nervous on the day of my appointment. Probably more for the third thing than anything else. She has been really good with listening and considering things I want to be done. Obviously I listen to her advice too! It's just nice to know that your GP is a path to further care, not a barrier.
I swear I spoke far too quickly during my appointment. I didn't think I made a lot of sense either. I'd written down what I wanted to say but the brain fog was back and I couldn't get my words out as fluently as I would've liked. Somehow she made sense of what I said though.
She said she'd get the referral done straight away. I was very relieved about that. The specialist for Fibromyalgia is supposed to be a Rheumatologist as far as I've been told so hopefully I'll be getting someone with a lot of knowledge about it (hopefully).
She also upped my Pregabalin dose. I was originally on 50mg a night (2x25mg tablets). I'm now starting on 75mg a night, going up to 75mg in the morning and 75mg at night (150mg in total so dose is tripled!). This sounds more like the dose I should be on, so hopefully I'll notice some kind of difference.
I did mention my Atos assessment coming up as well. I really am nervous about it and have left it too late to ring up and ask about having the assessment recorded. Stupid me. I think I'll just have to bite the bullet and try to deal with whatever is thrown at me now. I know I'm not well enough to work. God knows I've tried to think about what kind of things I could cope with in the workplace in my current condition, to no avail. I am not a scrounger. I need that ESA and I do intend to apply for work once I feel I could cope, and that it won't make me worse. I know there's not much my GP could say, just to mention that I am still under investigation although Fibromyalgia is the diagnosis I have been given. I'm guessing I should show my hospital letters too to show that I'm being taken seriously...
Ok, so by that time the GP was asking if there was anything else I wanted to talk about. I nearly said 'no' but I took a deep breath and started to tell her about how I'd been feeling emotionally/mentally.
I said I'd been having some very very low moods but I wasn't sure if it was worth mentioning because some days I actually don't feel so bad. I try and keep myself busy; doing things I enjoy. It's just that, the thing is, once I've stopped doing the things I enjoy, my moods go very low again. I beat myself up mentally, feeling guilty and worthless and frustrated that I can't do the things I used to (socialising lots, working, earning money, travelling). I wondered whether the 'good'/ok/not so bad moods I had were because I was distracting myself. Not letting myself think even. It's just all getting very hard to cope with.
At this point I had managed to burst into tears. I was very apologetic about it too. I hate crying when I'm trying to explain important things. I always think of myself as an emotional person but I hate, hate, HATE showing that kind of emotion. I think of it as a weakness. I don't see it as a weakness if anyone else does it but only when I do it. I felt that I had opened this floodgate (literally!) once I had broken through and spoken about my mental health. I'd completely let the barrier down and was ready to face the consequences. It was a bit of a relief but also left me feeling vulnerable.
I explained that I hadn't been very honest about my mental health with previous GPs as I was worried that all my physical symptoms would be attributed to a mental health condition, the physical symptoms would stop being treated and I would be given a load of anti depressants/anti anxiety meds again. That would be a huge step back for me. I don't have a problem with people taking these meds if they truly do help. What would give me the right to have a problem with that anyway? It's just that I want to TALK. That is the best treatment for my mental health.
The GP was actually amazing. Before I even had to explain, she said she knew that it was the physical illness causing the mental illness and NOT the other way round. She understood that chronic physical pain often went hand in hand with conditions such as depression and anxiety. She actually ASKED me if I wanted to try some anti depressants or if I wanted to consider counselling. Through my tears, I nodded for counselling. She gave me a self referral number to put myself on the waiting list to see someone. I was very grateful and the appointment ended there.
It felt like a very successful and productive appointment. We must've gone over the 10 minute limit but she listened to me, she was understanding, helpful and patient. I don't think I've ever had that with a doctor before and I appreciated it so much. It feels like half the battle has been won, just to have a co-operative doctor.
So, the next step is to actually call this number. Something I'm hesitant to do (I know, I should call soon) for a few reasons:
- I'm still not very good with calling. Partly due to the brain fog, partly due to me getting nervous talking to someone I can't see. If I can email/write instead, I will take that option. At least with those forms of communication, I can explain myself properly and think about what I want to say.
- I have this real sense of not 'deserving' to call up for counselling. I'm still confused about the ok/almost good moods. I don't think they're that rare, they happen at least twice a week (I think) so are my bad moods consistent enough to warrant intervention? The reason I spoke to the GP was due to the fact they are there, they happen a lot and they are very bad. I do still get the days where I think about wanting to not live anymore. It's terrible I know. There are people in much worse positions but, it doesn't matter how much I think about that, it doesn't take away the fact that sometimes I don't see a point to living anymore.
- I worry that the counsellor will wonder what I'm even doing trying to get help with my mental health. Are these low moods just me moaning/complaining about things? Is it 'normal' to have these thoughts? I know I'm not coping with them very well. It almost angers me that I can't just throw away my feelings of guilt and selfishness and just get on with 'it'. I want to stop thinking in this way as I don't think it's healthy.
I think my next post will probably be about the phonecall to the counselling service and/or the Atos assessment. I think I need to throw in something positive too, the posts have been a bit depressing recently.
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