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Friday 19 February 2016

Half term = Valentines Day, ECG, London, Neurology appointment and REST, REST, REST!

Wow it's been a long time since I've blogged! I meant to at the weekend but it uses a lot of mental strength which I haven't had, plus I've been pretty busy! I can't even remember what my last post was about. I'm in a lot of pain today so I'm writing this quickly and I doubt I'll proof read so please excuse any mistakes!

It's half term and I'm having the loveliest week off. The first couple of days I rested (I think, I can't actually remember that far back)! Sunday was Valentine's Day and I was all set for a "date night" in the flat, we were going to eat lasagne, watch a film and chill. We got ourselves all dressed up and cracked open the prosecco, when a taxi arrived,  I got whisked away in the snow to my favourite restaurant!! It was so romantic and perfect. 



Then on Monday evening, Adam and I traveled down to my mum's in Essex ready for our day out in London on Tuesday. 

I had a doctors appointment on Monday morning, again she was very helpful and we discussed lots of things. I had my arms examined again and they are stiffer than ever and are still becoming weaker which is a bit scary. We discussed pain relief and how if my brain scan comes back clear then she will refer me to a pain clinic to discuss alternatives. I mentioned about my heart rate and she was very concerned and wanted this looked into before the brain scan. I had an ECG that day which came back clear but since the concern is when I am standing, that was not overly helpful and quite frankly a waste of everyone's time. The nurse who did it didn't listen to a word of what I said and when I explained the problem she just said "well we don't do those tests here" and did the normal ECG. 

Anyway, it was lovely to be at home! I love spending time with my mum and her fiancĂ© and I had a lovely relaxing bath! I do miss having long baths since we don't have one in our flat. I bought some Epsom salts and gave them a try since I've heard great things about them helping with pain. Unfortunately it didn't help me, though I felt very chilled and relaxed afterwards. Baths actually make the pain in my legs even worse due to the heat. 

We had a long lie in on Tuesday so I could rest up lots before our day in London, which was absolutely perfect!! We got to London, went for afternoon tea in The Orangery at Kensington Palace before going on a long walk around the grounds - obviously I didn't walk, I was pushed! Then it was was off to the Shard which was amazing!! The view was breath-taking and we were so lucky to have such a clear night. After that it was straight to the Duchess Theatre to see "The Play That Goes Wrong", it was absolutely hilarious and I would 100% recommend it to anyone. Obviously I was feeling poorly but I dosed myself up and pushed my illness aside for the day and really enjoyed myself! 




We left Essex and drove straight to Norwich station on Wednesday to pick up my friend Caoimhe who came to visit for the day. She bought me a card and 2 donuts which was so so kind!! To me, these presents weren't just donuts, they were proof that she understands me and how I am feeling. I have been quite down and upset about my health so that gave me a big boost which I needed. We chilled out, went to nandos and to the cinema to see Deadpool. Adam joined us for the day as well which was fun and lovely to see them getting to know each other better too. We went for a quick drink before she had to get the train home. 

Of course, when I woke up on Thursday, I felt AWFUL. I'd pushed my body a lot for 3 days and it caught up with me. I needed just to stay in bed all day and give myself the rest I was so desperate for. The pain/exhaustion/nausea etc lasted all day but thank god for pain meds and anti-sickness meds that I could actually sleep and let my body recover a bit. 

Finally, today I had an appointment with a neurologist. He asked lots of questions about my diagnosis, the build up to diagnosis, things about my daily life, main symptoms (there wouldn't have been time to discuss them all!), then he did a physical examination on my limbs which was pretty painful but okay. He tested my reflexes which again are a bit too strong but he isn't overly concerned. He stabbed me with a pin to test my sensitivity, which HURT! And just when I thought things couldn't get more painful, he decided to re-do the 'tender points' test for fibromyalgia which oh my god I haven't felt pain like that in a long time - which is silly for someone who faces chronic pain on a daily basis! So obviously that confined my fibromyalgia diagnosis along with CFS/ME. We discussed the heart rate problems and he told me that it is a relatively common symptom for ME so that isn't a concern anymore and I am now waiting for the brain scan appointment which should be soon. This is to look for nerve inflammation and to rule out MS (multiple sclerosis). I can't really remember what else was said, it was an exhausting, painful appointment but it's a weight lifted about my heart rate. 

I can't believe it is Friday already and that I'm back in work on Monday! I have a bit of planning to do but the main focus this weekend is rest. I plan to get as much as I can before term starts again. I'm absolutely exhausted now and in a lot of pain so I'm going to sleep now. 


Sorry it's a long post, thanks for reading xx

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