Had a lovely quiet holiday weekend, but did enjoy my first outing in a couple of months on Christmas day. Was super blessed to have such understanding and considerate friends and that the Lord gave me just enough strength and relief to be able to really enjoy the day! Praise God!
December 3 is International Day of People with Disabilities. It's a great opportunity to raise awareness and make some noise all over the internet (and in real life) if you can manage it.
The message I want to get across this year, is that not every disability is visible.
It all started in 2014. I would occasionally get random, migrating pains in my hips, thighs and arms. It was quite painful and alarming. Because it never hung around long, but just came and vanished quickly, I didn't do anything about it. It wasn't very frequent initially.
By November 2014 I was in constant pain. At this point I went to see my doctors, but they couldn't help me. They did loads of blood tests and couldn't find anything wrong. They were frustrated and had no answers. So they just sent me home with painkillers. Months passed, but the pain didn't.
Let me just set the scene here: I was working full time in a job I absolutely loved. I had a full social life which included hanging out with housemates and my friends from church. It was also a stressful year due to all sorts of external circumstances, including a move into my own flat, an attempted illegal eviction and the loss of my closest friend, but I was making the most of it, enjoyed working and having lots of fun too.
I decided to take matters into my own hands. I decided that this undiagnosed pain was simply my body telling me that I needed to get fit and healthy. I wasn't eating too well at that point in life, eating lots of things I should have been avoiding, and I was very overweight. I decided to change my diet to try and improve my health.
I researched food and health issues I knew I had and came up with a diet I thought would be beneficial to my own body. It was very natural and healthy. I later discovered that it was basically something called Paleo. I hadn't heard of it before, but it was great.
I finally started this new lifestyle on the 1 February 2015. Spending the next two months eating clean and doing exercise to lose weight and get fit. Little did I know, I was doing the very thing that would make me worse!
I believe that I already had undiagnosed Chronic Fatigue Syndrome and by increasing my exercise and my work load, I actually did more damage. Despite having lost 9kg on my new diet and feeling much better about myself in general, I was getting ill frequently and often had really bad migraines. I started getting really sleepy at work and dosing off by 10am! Not okay.
By Easter Sunday I was completely out of it. I had already been in bed for a few days with terrible earache and a horribly sore throat. That's when the shaking started and I knew something was very wrong.
After another 2 months of doing and redoing blood tests without any clues as to what it could be, it was finally suggested that I might have Post Viral Fatigue Syndrome. I was told it usually goes away after a few weeks, but that in some cases it could last for a few months. I was unhappy with the diagnosis as I knew this was not just fatigue, it was so much more!
I went to Google and was surprised to find that every search result took me to pages about ME/CFS. When I read all the symptoms (there are over 30 common symptoms) I realised that I had almost every one of them! I just never thought they were related. It all started to make sense. I was eventually re-diagnosed with CFS.
Despite the most unfortunate name of this illness, the diagnosis fits my condition perfectly and it has since been confirmed by various people including doctors and psychologists at a Chronic Fatigue Clinic.
By the time I had my confirmation in writing, over 6 months had passed. Unfortunately, this is a very common time frame for diagnosis of ME/CFS as they hope the initial post viral fatigue passes or that they can rule it out by finding something else to diagnose. This is terrible because it means that patients spend the first, crucial months trying to push through and live normally, when they should be resting for a better chance at recovery.
A diagnosis did bring relief, for a while, until I realised there's nothing they can do for me and I was more or less left to manage it on my own. Doctors can prescribe painkillers and antidepressants and they will sometimes refer patients to other specialists for further investigation or confirmation of diagnosis. That's it.
There is the possibility that Cognitive Behaviour Therapy or Graded Exercise Therapy are prescribed, but neither are a cure and patient recovery rates are below 10% with both of these therapies.
Graded Exercise Therapy has also been known to cause more harm than good.
As a result of much debate and the debunking of the controversial PACE Trials, the NICE guidelines for the treatment of ME/CFS are currently being reviewed.
I was offered CBT which I attended for 2 years. It did not help me improve, but it did provide some insights and practical advice.
A couple of days ago we had some gorgeous sun after a few dark and dreary days… Here I’d just got up and was getting dressed when I realised how warm the sun was and decided to sit right there and collect some sunshine D! Only managed ten minutes in that chair, but it was lovely and warm.
My flat is so tiny, here I’m sitting right in the middle, halfway to the bathroom (top right), kitchen (behind me) and my bed (on the left side where photo is being taken from)… You might be able to see my walking frame standing on the right side of me too…
I love the sunshine so much, the warmth really brings a sense of wellbeing and eases the aches a bit. Not looking forward to a long winter, but it will make those sunny moment that much more amazing!!
Hopefully you can’t tell how horribly hairy my legs are or how one has been partially epilated while the other remains fully furry! Just had to stop after three lines up my leg… Take it in shifts. Might do some more today actually.
I know it’s not necessary, like painting ones nails, but it does make you feel better… Well, it makes me feel better anyway. Still hate seeing how my legs have deconditioned so much, no shape, no tone or muscle, just skin and bones which are now easily felt – it’s grosses me out that I can feel my own skeleton!! lol… But I know that one day I’ll be able to do a bit more activity and rebuild my muscles again. Till then it’s a matter of making sure I don’t lose them completely and then lose the ability to move myself.
So Maintaining movement, however little it might be now, to keep the joints and muscles as mobile and strong as I can now. Without overdoing things and making my general wellbeing worse. It’s a fine balancing act trying not to boom and bust… I tend to do too much and crash.
So grateful for all the help I get at home (my sis) and through the NHS (my therapist). PraiseGod!
Three years ago today I took this photo of the sunrise and added the devotional message for the day. Today I’m sharing it as I remember the beautiful image painted in the devotional of how God lifts us up by His strength. On wings like eagles…
Today marks 18 months of this CFS. At least 18 months in this severe housebound state, we imagine I had it milder for at least 6 months before this.Continue reading