My Medical Condition – I look OK but I’m not.

I have mentioned this before but, I am sure others find it difficult to recognise that any of this applies to me.

One of the side effects of it is that the sufferer (that’s me) keeps pushing through which is actually the very worst thing which can be done.

Take a look at these posters showing the typical symptoms.

I am going to concentrate on the last poster and explain it, how it relates to how I am …

  • Muscle Pain – Can be severe and is random across my body and can change throughout the day. It’s rarely a ‘real’ pain in that, there is no injury or damage creating it. What happens is that the pain receptor nerves randomly fire sending signals to the brain identical to those as if there were a physical injury so, to me, it’s very real.
  • Joint Pain – Much the same as Muscle pain only this one creates confusion with my joints leading to weakness which are the cause of falls.
  • Post-exertional fatigue – This doesn’t differentiate between physical or mental exercise.. In a ‘normal’ person they can have a run and the recovery time is really quick. If I were to run it could use all the available energy I have for that day. Just typing this out for you is killing my available energy. Prolonged exertion such as several days of a ‘work’ equivalent will often take weeks to recover from needing considerable bed rest, more on that later.
  • Chronic Fatigue – This is the ‘normal’ state for me. I never feel fully awake, never ever. Imagine how you would feel if you lost a complete night sleep. That is how I feel on a good day. On a bad day it is two nights sleep and jet lag.
  • Brain Fog – This one looks like dementia which scares the hell out of me. Going into a room and not remembering why is common. Forgetting names or muddling names up. Not recalling simple words in conversations.
  • Memory Issues – This isn’t much difference to brain fog but specifically it refers to not being able to learn new things, such as a language. Having a lesson and understanding it but, losing it all really quickly.
  • Concentration Difficulties – In me this is such things as struggling to watch a TV show or a movie
  • Headaches – Thankfully, this is one I rarely get.
  • Sleep Dysfunction – This is a huge part of it. Essentially, this illness stops my brain from recognising when I have slept. A sleep monitor will show several hours of REM sleep yet, my brain registers nothing. It is similar to those people who don’t register they’ve eaten and always feel hungry. It is also not something whereby I can logic my way out of it. Even though I know I slept OK, the chemicals my body would produce with sleep to refresh me, don’t get produced. Several hours sleep might be needed just to achieve a minimal increase in energy levels.
  • Heat/Cold Intolerance – This is quite bizarre. It is around 14°C in this room and yet I am sweating. If I picked up a cool can of drink, I’d find it uncomfortably cold. It is why I now must have a car with a heated steering wheel and air conditioning. Things which used to be a luxury have become a medical essential.
  • Marked weight gain/loss – This one makes perfect sense. If I cannot exercise as I used to then unless I reduce my food intake radically, I am going to put on weight quickly.
  • Flu like symptoms – Again, I am fortunate that this doesn’t happen often. That said, other symptoms I shall mention later do resemble this.
  • Sweats – Not in the last list but in others and related to the point above. I randomly sweat and feel really hot and this has nothing to do with the temperature. It is annoying during the day but, it wakes me up at night to the point I will throw the bed clothes off and then wake up some time later shivering.
  • New Sensitivities – For me this is light and sound. I find many sounds uncomfortable. Even music I have put on myself can become uncomfortable after a while. I love bright light, a glorious sunny day is heaven to me but, at the same time, really painful.
  • Tender Lymph Nodes – Yes, this is true but, it doesn’t trouble me as it seems so minor by comparison.
  • Sore throat – Yes but again I don’t see this as particularly worrying
  • Orthostatic Intolerance – I feel this is too closely connected to some of the earlier points to deserve a separate mention. Needless to say, I find just standing very uncomfortable.
  • Vertigo. palpitations – Not something I suffer from
  • Irritable Bowel Syndrome – Most definitely and one of my main reasons for never wanting to stay in someone else’s house. Alongside this is severe bloating and discomfort. When I have to go it is consistently explosive and creates a huge mess. Again, one of the reasons not to be somewhere I can’t easily clean up. Just about anything can bring it on.
  • Bladder Dysfunction – My bladder can ‘forget’ to tell me I need a pee for an age and then it goes from not needing to pee to major bladder emergency in minutes!

So, that breaks it down for you.

What can you do to help me?

  • Don’t have expectations that I can do what it looks like I can do
  • Don’t be shocked if I use a walking stick or an electric scooter to get about
  • Do ask questions if you are unsure about what I can do, it will change from day to day
  • Please don’t question my decision not to drink alcohol, it makes my condition worse very quickly.
  • Please, don’t be offended if I appear anti-social. It just means I have run out of energy and need to rest.
  • If I seem angry just ask me if I am OK, it’s most likely I am really struggling to get through my day and will need some help.
  • Talk to me like I am ‘normal’. I don’t have dementia even if it seems like it! I am just really, really tired.
  • If I am driving and say I need to pull over for a nap, allow that to happen, indeed, encourage it.
  • Make sure I drink plenty of water, dehydration is a common issue.
  • If I cannot learn your language it is not because I don’t want to or I am not trying. My brain just isn’t functioning at that level much of the time. Never give up trying though. Just try not to get frustrated as, there is no point, your frustration is nothing compared to mine.
  • If I mess up my words or get yours and everyone else’s name wrong, it’s OK to laugh about it, it is how I deal with it.

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