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 :)

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