Tuesday 24 September 2013

I can do this

My parents set off for their holiday this morning and the house is so quiet now! I'm rather jealous of them, could do with some sun, sand and sea but I couldn't afford it. Ah well, maybe next year! Frankly, I'd be happy even with just a weekend in Llandudno or something. My city isn't exactly the most cheerful place to be.

I haven't had a house to myself since uni, and my health was a bit better round that time, so obviously I'm quite nervous. My brainfog's been awful so the house is full of lists of things to do, to remember when certain people are turning up, appointments etc. Good job I've kept all my letters :)

Argh I'm glad of a bit of peace and quiet. I love my parents to bits but my dad in particular can make a stressful situation ten times worse. I know he doesn't mean it and he does eventually calm down if you have a word with him, but he's a real stress head (more so than me!!) and he likes to pace, and huff and puff, and sigh, and swear and generally get angry at the smallest things. When I'm in the middle of a flare, or generally having a bad fibro day, it does. not. help. I don't think he gets the concept of sensitivity to sound either...

I am nervous though, for many reasons. I worry about having to take myself to my next psych appointment, haven't travelled alone in a while. I hope I don't get all anxious when I sign in at reception. I get all disorientated on my own anyway. Need to learn how to be calmer and feel more in control. I also worry about the horrible thoughts going into my head when I'm alone. I will try to distract myself but sometimes it's impossible and I end up curled up in a ball crying at nothing in particular. Also, I have a phone WRAG appointment. I hate phones but getting to the place is so stressful and exhausting even with dad driving me and coming in with me. I barely coped the last time! I also worry about housework and shopping; whether I'll cope with that on my own. There's no one to take over if I can't do it so I'm gonna have to pace myself very very strictly; hence the lists. I have one thing to do a day, housework-wise. Two if it's a good day. If I can manage to run a hoover round it is gonna have to be literally the ONLY thing I do that day. It puts strain on my shoulder, arms, legs, hips and back. Not fun but it does have to be done.

The friends who still talk to me are being amazing :) They've offered to help if needs be. I'm the kind of person who is always too polite (or stubborn!) to ask for help but I will listen to my body and ask if needs be :)

The psychologist has told me that I have to make sure I'm doing one thing each day that I enjoy. I plan to get the musical instruments out and see just how rusty I am hehe! My flute teacher in particular said to never give up playing flute. Back in 6th form, she said I'd got to a point where I was able to play pretty much anything. I'm thinking of having a crack at the Pride and Prejudice soundtrack :)

Ok, I think I'll leave it here. I'm pretty sleep deprived and knackered so should listen to the advice my parents gave, after my hectic few days, and REST.

Wednesday 18 September 2013


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.


(I'm not sure if I need to put any kind of reference here, but I don't want to take the credit for it or anything. I came across the video on a support group for invisible illnesses)

I guess brain fog can differ for each person who experiences it. It affects how easily someone functions. at differing levels for everyone. I think I've had the dissociation side of things for much longer than I had fibromyalgia symptoms; right back to when I was in secondary school. I wasn't diagnosed with any anxiety disorder but I suppose these symptoms could have been caused by the anxiety I experienced from bullying. Let's go back to those feelings.

I used to feel very self conscious at school. It was all about image, how you dressed, what your hair was like, how loud you spoke, your body language and mostly about fitting in. I'd have times where I experienced what I suppose now would be a mild form of dissociation. It was like I was watching myself walking through the corridors, sitting in the classroom, reading whatever exercise book we'd been given etc. I don't think my concentration was that bad unless my mood was low. But yes, everything used to feel so surreal and it was more often the case when I was in classes with the bullies. They may not have been saying anything to me at the time, it may have been afterwards, when I was just left on my own with no one to talk to. Maybe it was my way of protecting myself? It was a strange time in my life anyway. It did sometimes feel like I was watching myself saying words to another person when I was talking. Like it wasn't really me speaking.

I get these feelings now, especially when I'm at medical appointments etc. I don't know if that's separate to the brain fog or a part of it but I will explain the other part below.

Imagine a really simple sentence. Something about your day maybe, e.g. "Today I ate some pasta". Now imagine you can't think of the word "pasta". You either say a completely different word or your mind draws a complete blank. This happens as quickly as flicking a light switch. One minute you know exactly what you want to say, the next, it's like you can't mentally access what you want to say next. I guess it's hard to imagine if you've not experienced it yourself. It's not particularly easy explaining brain fog and showing that it's more than just your mind going blank once in a blue moon, because it happens on a very regular basis. I have times where I don't even realise I've said the wrong word/s. I may have said something to someone and in my head, what I thought I said was completely different to (and a lot more sensical than) what I actually said. No wonder this person is giving me weird looks!! In my experience, it's happened when filling in paperwork as well. I've put a word twice without realising, I've put 'ing' at the end of a word about 3 times, I've missed out the main word in a sentence. "I felt 5 times this week" (missing out the word "dizzy" when it's the most important point to make). I also have had times where I get my S's and my C's mixed up. Like I'm asking how to spell something someone asked me to write down for them and they say something like "It's spelled *something something* S" I keep writing down C. Does this make any sense? lol.

Ok so, I'm not speaking for everyone who has brain fog of course. I'm sure it affects everyone (who suffers from it) in different ways. This is just me explaining what it feels like to me in particular.

Friday 13 September 2013

Eye emergency, WRAG appointment and first Healthy Minds counselling session

Heyy, I think this is a bit of an updating blog post again. I'm absolutely exhausted from all these appointments and I have more to make! Blah.

Ok, first one,

Eye Emergency:

I wear monthly contact lenses about 2 or 3 times a week. When I first got them, I was told eye drops weren't needed unless my eyes got too dry. I didn't have any problems up until Saturday night. A couple of hours after I took out my contacts (carefully and very hygienically might I add) I had some irritation in my right eye. It only felt like a little scratch and, when I checked in the mirror, I couldn't find anything. I went to bed and slept soon after that.
I woke up at around 4am on the Sunday in absolute agony. My vision was very blurry, I felt like my right eye had been wrapped in barbed wire and it burned like it was on fire. I also could barely open it because it was all red and swollen. I woke my parents up to tell them and they said it might be severe conjunctivitis and to try and sleep, then we'll see what it's like in the morning. I spent the rest of that night, tossing and turning with a cold wet flannel on my eye, trying to soothe the pain as much as possible. Needless to say, the pain hadn't subsided and I was screaming out in pain. Dad took me to A&E.
Because it was an eye emergency, they got me seen to as quickly as possible and I was told I had a lot of severe abrasions on my eye (my left was fine though) and that it was probably due to my contact lenses damaging them. I had to take 2 types of eye drops hourly and 1 type 3 times a day. It would make my vision blurry as the one type of eye drop was designed to dilate the pupil of the affected eye. It's still quite blurry now but not as bad as before. I had to wait until today to write this post because of the blurry vision. Having it constantly made me feel really disorientated, dizzy, nauseated and generally feeling ill. Luckily the damage isn't permanent and the scratches are pretty much all gone.
When I went for my follow up appointment yesterday, the Opthalmologist told me I had permanent white marks on my cornea as well. This was due to a virus I'd had (no idea what virus it is, but there you go!) I could've been prescribed steroids to get rid of them, but I'd be on them for life. I decided against this as the marks were purely cosmetic. They don't hurt or affect my vision so I don't want to be on even more medication; especially not steroids!

WRAG Appointment: 

On Tuesday I had my first Work Related Activity Group appointment. It took a while to walk from my dads car to that appointment; as there is no parking nearby. I had to keep stopping as my leg was getting weaker (my right one seems quite weak at the moment) I was getting dizzy, tired and couldn't catch my breath. I think there's some disabled spaces nearby but I'm on the fence as to whether it's worth all the stress and possible rejection to get a blue badge. I know I need one but all these appointments wear me out so much, I just don't know if I have the energy for another assessment.

Anyway, I got there just in time and was taken straight to the advisor. She asked me about my condition, limitations etc then told me straight off that the DWP saw Fibromyalgia as a short term condition so I would not see her again. Short term? Friggin short term? I've had this over 3 years and it has got worse! I don't see that as short term, do you? So she said I had been placed on the Work Programme and was to be dealt with by another organisation. I told the advisor that Fibromyalgia is a long term condition. Once you have it, it's for life as it's incurable. She actually knew this, as her auntie has it, but unfortunately she doesn't have the power to argue the DWP's decision.

I hate having this condition. If I'm going to be this ill for this long, I'd rather have something that is a lot easier to prove through blood tests, scans etc. Why do I have to feel like I'm on trial all the time? If one of the decision makers could step inside my body for a week, they'd know full well what my limitations are, how I never really have a 'good' day, why I don't make regular plans because I can't predict how things will be on a particular day and I hate letting people down.

Ok, so I was sent away after all the admin-y things were sorted. Paperwork given out, being put on the phone to this organisation (with Pertemps would you believe. i.e. a recruitment agency?). I'm on the work programme for 2 years but I think the advisor mentioned I might be reassessed in 6 months as my condition is 'apparently' "likely to improve" in 6 months. Well it hasn't improved within 3 years, so, unless the doctors come up with some miracle treatment, I'm not too optimistic :/.

I had a letter come the other day, called the Invitation to Work Programme. I had a real panic when I read the details! It talked about an induction that would last between 2 and 3 hours. Now when I read the word "induction", I thought I'd be expected to do lots of work-related tasks (office work, filing etc). I was imagining being plonked at a computer and having to do 2-3 hours worth of work! No wonder I panicked. I may be able to sit at a computer for a bit, but I'm writing this sat on the sofa, moving my legs so they don't stiffen, part-dislocate or cramp up and cause extreme pain. I have 2 cushions and a pillow behind me so my back doesn't hurt too much. Even though I have all this, my neck, shoulders, back, hips and legs still hurt and my hands cramp up easily so I have to rest every 10 minutes or so. And this is at home. What office would provide me a very cushioned chair with space to move my legs constantly and no targets so I can rest my hands/arms without severely disrupting productivity? This is part of the reason why I can't even consider basic office work at the moment.

Well after my panic, my mum kindly rang this place for me. It turns out, this induction is more like an interview with an advisor there. The timescale was also an average time because of how busy the building gets. I can now expect to wait up to an hour. This means my dad can come in with me thank god. This is also the limitation I have. I have to have someone with me for appointments, interviews etc. I don't get anxious talking to a person I don't recognise, but I find it hard explaining everything because of my brainfog. I already forgot to tell the original adviser about my leg stiffness and I really hope this new adviser has the atos report. I will bring along my copy just in case. I just really hope I'm not forced to do things like work experience etc. When I feel I can cope with work situations, I will be doing everything I can, but doing too much causes major flares for me at the moment. It's just not worth the risk!
I will keep you updated on these appointments.

First Healthy Minds Counselling Appointment
TRIGGER WARNING: Mentions of suicidal thoughts and abortion. 

On Wednesday I had my first counselling appointment with Healthy Minds. I had no idea what to expect to be honest. I'd been feeling pretty numb recently, trying to distract myself so I didn't think for too long, so I wasn't sure how to explain everything to the therapist. I thought about writing notes, but didn't know what to put, so I just went along and hoped my mind wouldn't let me down.

The therapist was really good. She asked me lots of questions but didn't rush me. It felt more like a chat I guess, although some things were hard to talk about. We covered so much and she kept me informed of everything.

We talked about my suicidal thoughts. I feel so bad talking about this because I end up doing it in such a matter of fact and calm way. I don't want people thinking I'm sick in the head or something. I know it's not healthy feeling this way and thinking about suicide as often as I do. I may not be planning to do anything (although, admittedly, I do come close sometimes) but it's always at the back of my mind. I don't really know how I'd do it. I told the therapist about the methods I've thought of but I was scared about being unsuccessful and ending up in agony in hospital getting my stomach pumped or something. It's something I think of as this option if things ever went absolutely tits up i.e. if I alienated more friends, family and/or realised just how hopeless my love-life was. I feel like I've lost so much already, but I know that I would hurt and upset and anger people even more if I went through with it. As much as I feel like a burden and a shit friend, I'd feel even guiltier if I ended it all. The feelings always get stronger when my symptoms are worse. Feeling sick to my stomach, weak, in pain all over, can't think straight, can't concentrate on a thing, have to cancel plans. When I feel that way, I can't do anything but think and then I have the horrible 'crashes'. It's just that option I think of when I just want everything to stop. If my life will never get better, I don't want that life. My parents go on holiday near the end of this month. Because of the thoughts and crashes and self loathing I have, I worry about being in the house on my own for this long (10 days). I had to just stop hiding it and tell the therapist that I worry about these thoughts and that I worry about getting so low I do plan out ending it all (I'm so so sorry guys, I know this is horrible but I have to be honest here!). I think that worried her to be honest. I don't think I'd do it. I'm not in the frame of mind right now where I would do it. But what if I get to a stage where I don't think about my friends, family, the future etc. What if this 'thought' is all I can think of? She said she wants to see me for an appointment during these 10 days. I think she wants to make sure I keep my moods up as much as I can so I can cope with being alone. She also said I need to try and make plans, have friends over etc. I will definitely try. Believe me, I don't want to have these horrible thoughts. It's just hard to control sometimes. I told the therapist how I rely on distractions.

We then talked about the abortion. I actually shudder when I say or read that word. It just sounds so abrupt and it drips with stigma. I couldn't think straight when I was explaining it to her. I was trying to explain how I needed to get closure and to stop feeling guilty. I feel so guilty and selfish for doing it because I wasn't so ill that carrying a child to full term would be too difficult to cope with. I know people who have had children at young ages and they are brilliant mothers. Maybe I felt like I'd taken the coward's way out? I made the decision so so quickly. I was young, irresponsible (I drank a lot and very often), all I wanted to do at the time was be young, but finish my education and stick to my plans. I wanted to do everything for 'me' I guess. This is why I felt selfish. It wasn't this baby's fault that I wasn't ready for him/her. But I was only 5 weeks pregnant at the time. The therapist asked me "What if you had had the baby?". When I talked through what my plans would be, I felt even worse because I felt that maybe I had made the wrong decision. I've always wanted to be a mother. Hindsight is a real bitch isn't it? It's bringing me to tears pouring my heart out here. All my deepest darkest thoughts out there. Keeping them bottled up just eats me up inside though.

The therapist said that she would refer me to a bereavement counsellor. That set me off again. The word bereavement. She said she felt that I'd never had time to grieve. I suppose I haven't really. I went through all this literally days before my first year exams and I never even told my university about it. I went to my appointments, took the pills that made everything happen and took the strong codeine to help with the pain. I brought my little box of codeine to my exams, sat at the back, held my stomach, grit my teeth and got on with it. I had to throw myself into my studies as much as possible so I couldn't think about this. I had to push every single emotion right down so it couldn't break me.

We then turned to the computer to do all the depression, anxiety and phobia questions again. To see how things had changed since my triage appointment. Beforehand, my depression score was so high that the therapist said antidepressants would have been needed alongside the counselling. Now I am in the moderate/severe depression category. I told her I didn't want anti-depressants because they didn't suit me before. They made it even harder to think clearly and not being able to access my thoughts scared me. So talking therapy it is. We had a look at my anxiety score and I think that one had gone down a bit as well. The anxiety is mainly due to my overactive bladder. I worry so much about situations that do not make it easy to access a toilet. We need to work on this, and I need to be more assertive in those situations. I told her about the lack of a toilet in the jobcentre, and how this made me have panic attacks. It caused me to be sanctioned, as I would get very ill just before my jobcentre appointments and would have panic attacks so bad I couldn't got to any group sessions. And this was back when I thought I was well enough to work!

The phobia section hadn't really changed. I have had a phobia of wasps for a long time. I'm not sure how I got it. I used to be a bit scared of wasps but it didn't affect going outside or eating/drinking outside when it's sunny. Nowadays I will avoid anywhere I can see even just one little wasp. My blood runs cold if one goes near me and I feel really faint for a while afterwards.

Ok so, at the end of this appointment she gave me some 'homework' to complete over the next fortnight. I have to keep a 7 day diary of what I did and how I felt on a scale of 0-8. I also have to write down what I do/plan in those 10 days. She seems really lovely and supportive. She's also sending me some breathing exercises and a relaxation CD as the nights tend to be the worst for me and I want to sleep better/earlier.

I will keep you all updated :)

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 :)