A day in the life of me with M.E!

Sometimes I wonder, when I complain about how I feel, even though people say they understand, how could they? 

I decided to explain what it feels like to me - some people may be different but this is how my illnesses affect me. 

So as you probably know, I suffer with chronic fatigue syndrome/ME which stands for myalgic encephalomyelitis and fibromyalgia. I also have a couple of secondary issues that have stemmed from the original diagnoses such as scoliosis and restless leg syndrome, but this are not life-changing as ME and fibromyalgia are. 

I decided that I would keep a diary for a day of how I am feeling both physically and emotionally. So here goes... 24 hours with ME... 

21/10/16 9:30pm

I just finished watching Sherlock with Adam, after the most amazing roast dinner. I'm all set for work and snuggled up in bed. 

21/10/16 10:30pm 

My back decided an early night wasn't on the cards tonight, I'm in agony and can't get comfortable at all. This is what we call "painsomnia", it is very very unpleasant as I'm sure you can all imagine. The muscles in my back are spasming, twitching and throbbing so I've had to get out of bed to get my painkillers. Adam has also sprayed me with deep heat which often, with the painkillers, eases it just enough to get comfortable. Not a great start to my working week when I can't even get the sleep I need. Let's hope they kick in soon!

22/02/16 5:45am

I finally fell asleep around 11:30pm I would imagine, not ideal when my alarm was set for 5:30! The first day back is always a bit mental so I want to have plenty of time to set up my classroom and set up for the day. I was meant to go into work on Thursday but was far too ill to go. I've got my usual stiff, painful, claw-like hands that I get every morning. This obviously makes getting dressed, doing make up and eating quite difficult but they do calm down within about an hour. My legs stiffen overnight so the initial getting out of bed is extremely painful too. The first thing I do is take my medication, this helps with the stiffness as these include painkillers. There are plenty of people who do not agree with using pain relief but the choice I have is stay in bed and suffer, or take tablets and be able to get on with my day. I'm sure most would choose the latter if put in my position. If you are able to do it without medication, fab! I, unfortunately, am not. 

22/02/16 7:15am 

 I've arrived at work bright and early to get lots done in the classroom - being too ill to come in on the day I wanted during half term has set me behind so there's a lot of sorting/tidying to be done. My meds have kicked in so I'm feeling okay-ish. Time to get things sorted before our meeting at 8:15! 

22/02/16 10:45am 

That meeting was hard work this morning, I forgot to take a chair in and I hate asking for help/admitting I'm struggling so I soldiered on. My back was not impressed! I was in a fair bit of pain but the meeting was pretty important so I had to push it to the back of my mind and carry on. I haven't been teaching this morning, as an NQT (newly qualified teacher) I get extra time to develop my own teaching by observing other teachers etc. So I'm not actually teaching til after lunch. 

23/02/16 5:45am 

Wow yesterday got busy!! I didn't get to finish my "day in the life of ME..." So I'll continue today! I was really struggling with my temperature last night, no matter what I did, I could not get warm. I even asked my new friend from Florida if she experienced issues like this just to check I am normal! (Well as normal as I can be for me). I woke up feeling VERY stiff, I managed to drag my body out of bed. It felt like each of my limbs had turned to stone over night and I had to lift the heaviness. I realised last night that even an hour's sleep will turn my hands into claws, i thought it could be from not using my hands for the whole night but surely they should not stiffen to that extent in an hour!? Who knows. Painkillers to the rescue. I would not be functioning otherwise. I'm sure my body will settle down in a little while ready for another busy day ahead. 

23/02/16 12:10pm

It's lunchtime! I'm feeling pretty rubbish. My legs have decided not to participate properly in life at all. They are so stiff at the knees, making walking obviously very painful. I feel like I'm wincing at every step but hopefully no one has noticed. Getting up and down off little year 1 chairs is not helping! Every time I stand up from the tiny chairs it takes about 10 seconds to stop feeling like ill pass out. I have my compression socks on today to stop the blood pooling in my legs which is meant to stop the dizziness and pain when standing. It's safe to say it is is not working today. I have an awful tummy ache and feel very sick which I'm hoping is just my usual stomach problems and not the bug that all my class seem to have! I'm ready for my next dose of pain relief so I hopefully it'll ease up the pain in my legs a bit. I hate feeling like I'm just counting down hours til the next dose though. However, wish me luck! 

23/02/16 6:50pm

Just got home!! So much to do at the moment but I'm determined to force myself to leave at 4:30 every day from now on. My legs did not get any better. They got worse in fact. I was asked by staff members if I was having a bad day so I must have been walking strange! I feel like I went to the gym for 2 hours and was then told to run 10 miles. Add that to twinges, burning and being stabbed with needles over and over.  That's how painful they are. This is why it annoys me when people moan about pain from the gym. At least you have a reason for the pain ... I don't like to be bitter but it's frustrating at times. 

My temperature has been all over the place too, currently I can barely feel my hands as they are so cold and they're stiffening up. My stomach still kills but I don't feel as sick. I feel like I need to go to bed but my mind is in overdrive at the moment. I'm not sleeping great, partly due to restless leg syndrome (secondary condition) which is elevated by stress (got lots of it) and partly due to pain. I'm going to have some dinner, stick some rubbish on the tv and try and switch my brain off. Sometimes I prefer the brain fog (where cognitive function declines and I can't think of words/watch proper TV etc) to the overdrive my mind is in. I've sprayed my legs with deep heat to try and get some relief so hopefully that helps. Codeine hasn't and I don't really want to take any tramadol but we'll see how the evening goes. 

23/02/16 9:30pm

I'm shocked I'm still awake after how rough I've felt today. I haven't needed tramadol so I'm happy! I'm very stiff but comfy and snuggled up in bed. I feel sick again and my stomach hurts, sometimes the best way I can describe these symptoms are a hangover without the alcohol. I've always been a sickly person so at least now I have a reason for it! My back and neck are throbbing so it's definitely time to sleep. I am watching Step Brothers as I always have to have something on in the background to fall asleep to, ready for another (hopefully better) day tomorrow. 

By all means, this has not even bad a 'bad' day. I will try and do "a day in the life..." On a bad bad bad day too. 

I hope sharing my day has been interesting(?) and has given people an idea of what having a chronic illness like the 2 I have is truly like. It doesn't go away, it just becomes part of life. I would like to think I stay mostly positive about it and am always holding onto hope that one day I'll get better. 

Good night :) xxx

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 fiancé 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