Last time I properly blogged, I had just had my neurology appointment. This was pretty pointless and did not give any answers. I felt a bit deflated after seeing him as he focused more on the headaches than anything else which don't even cause me that much grief anymore.
So, thinking back. My hands are worse than ever. Every time I sleep, even if just for an hour, they seize up, become excruciatingly painful to the point where I can barely move/use them. They remain in a claw-like position until they loosen up. This, luckily, is usually within half an hour. I saw a different doctor a couple of weeks ago and she brushed it off as 'just the fibro' and 'just the ME'. This seems to be fairly common when you suffer from a chronic pain condition, that any new things are just pushed aside. They are now swelling sometimes and I can feel the joints moving in my thumbs which is very very painful. Adam and I found a clinic in London that specialises in individual treatment plans from a neurologist, rheumatologist and nutritionist which we asked about being referred to that. My doctor told me on Wednesday that she wouldn't send me there yet, as there is one in Norwich. I asked about that one when I first moved and she said it didn't offer treatment, only diagnosis? So I am a bit confused by that. I wonder if they say that to patients until they realise they cannot actually help us alone.
Anyway, I went back to the doctor on Wednesday to chat about things as mainly I still wanted to ask about my hands. She had a feel of them and noticed that the muscles are very tight - this was in the evening and I explained they did not even hurt and the muscles were tight. So she is very concerned about that and has asked me to take pictures and videos of what they look like in the morning. She does not believe it is 'just the fibro or ME'. She is concerned there could be a possibility of auto-immune disorders happening which is attacking the muscles. Therefore, I have more blood tests booked to look for heightened inflammatory markers and whatever they look at for auto-immune things. I don't understand a lot of it myself but I don't need to until the results come back. It made me feel much better than someone was actually listening. I know my body and what my new 'normal' is and the pain and loss of function in my hands is definitely not normal.
This morning, at 7:30am (!!!!) I had my brain scan. I was pretty nervous as I have already had one on my back and it was not a nice experience. This one was even worse. The nurses put the ear plugs in for me this time which did nothing to dull the noise. I am sensitive to loud noises which is common in my conditions so this was quite traumatic. At one point, I thought I was going to have to press the button for them to get me out. I soldiered on through though and it only took about 15 minutes. For a head scan, they put a large plastic cover over your head and face with only a tiny mirror above your eyes so you can see what is happening in the room. I felt very claustrophobic, but as I said, it was only around 15 minutes then I was out and free to continue my day. Which as you can imagine, I just wanted to sleep. We went through the McDonalds drive-thru to get some breakfast as it was still only 8am! I asked for a breakfast wrap with no egg (I am intolerant to eggs) and no ketchup. So of course, being useless, they put both in. I didn't notice until I got home and Adam very kindly scraped it all out.
In general, I haven't been feeling great at all. The pain has been higher than usual even on a 'good' day, I've been exhausted and experiencing lots of my other horrible symptoms. I hugely overdid it two weeks ago, I went home to Essex for the weekend because my brother and his girlfriend had their baby on the 4th March. SO I AM NOW AN AUNTIE! He is the most beautiful little baby and I wish I could see more of him. I'll be at home for Easter Sunday so I can have lots of cuddles them. As well as having a newborn baby, the moved house the following day. Not ideal at all and I helped with the move - obviously only carrying small things, limited walking etc, but I still suffered awful payback. It didn't hit me properly until the Monday night when I was sick and couldn't eat or anything. I was in lots of pain and ended up having to call in sick on the Tuesday. I have learnt that I cannot do the 2 hour drive home on my own unless I have more time to recover.
Me with my beautiful nephew, Joshua
Work is absolutely fine as always as well. We have to start thinking about what year groups would be our preference next year and it breaks my heart to think about leaving my class and seeing somebody else teach them. I think they will always be special to me because they were my first class and they are just so lovely.
We only have 3 and a half days this week then I am off for two weeks!! I have plans as well for once. I am going to Telford to see my friend's cheerleading competition. It is strange because 2 years ago I competed there and now I will be being pushed around the arena in my wheelchair. What a contrast.
Me with the friend I will be cheering on! Back when we came 2nd in a competition <3
I really hope the two weeks off gives me a good chance to rest and recharge. I will get both the blood test and the brain scan results in those two weeks as well. If nothing comes up, I will be referred to the CFS/ME clinic and if something does come up, treatment may start for that. So either way, there is still more things to try to get me to recovery!
Thanks for reading :) xxx
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