ME- the real problem

Christmas 2018 was a healthy one…

For me Tourettes isn’t the problem. Tourettes Syndrome makes the problem a lot more visible to others.

I’ve struggled with ME/CFS- Myalgic Encephalitis or Chronic Fatigue Syndrome for a few years now. It’s an illness full of surprises.

What is ME?

Chronic fatigue syndrome (CFS) is a long-term illness with a wide range of symptoms. The most common symptom is extreme tiredness. (Fatigue) NHS.

Who gets ME?

CFS/ME can affect anyone, including children. It’s more common in women, and tends to develop between your mid-20s and mid-40s.

In simpler terms- imagine you’ve been doing the dreaded bleep test alone or 40,000 steps up hill- you’ve just finished and all you want to do is get into bed… instead you have to do the same thing again- no one can see that you’ve just done all of this, so you have to power through and pretend your fine & ready to do it again. Really? Yes.

Having ME makes you very fatigued. Constant exhaustion is something I have to deal with. I look rude for yawning. I look lazy for not being able to join in with others.

I spend much of my life responding to ‘I’m really tired too’ ‘how can you be tired you just slept 26 hours’ or ‘if you sleep during the day you wont sleep at night’ – trust me I will.

I don’t complain. There’s not much point in complaining. My mum and my sister are there to receive all of my frantic I hate life messages in our group chat (love you both) they are the two to listen to my complaints, other than that- I power through.

Spoon Theory:

I recently discovered the spoon theory and now it seems to be following me everywhere! I definitely need to be following it!

The spoon theory discusses the fact that we have 12 spoons a day. The average fit person has one task for each spoon. But for a sick person – daily tasks such as taking a shower often takes 3 spoons for me.

A friend of mine who I met being sick often asks me ‘do you have enough spoons to deal with my emotions as well as yours today?’ I love this. She understands. She knows that dealing with other people’s problems as well as your own can be difficult particularly when you’re sick so before bombarding me she is considerate.

Of course I’m always happy to listen to my friends if they are struggling. I’m learning to understand things are all relative and other peoples problems that may seem tiny to me could be a massive deal to others as life is all relative. I’m always interested to hear about other peoples lives but sometimes the tiredness takes over and I come across as though I’m not listening so perhaps arranging another time to talk is what’s best for us both.

Slurring my words, fainting, answering phone calls mid sleep and having no recollection of it is much more than just tiredness.

Empathy:

I am conscious of losing friends due to no longer being the one who is up for everything the first one drunk on a night out. I love my friends and I have come to discover who my true friends are – the ones who come over and do my washing for me when I’m sick, who organise my medication & simply just make me a cuppa! From a young age I was exposed to illness- I have/had many family members who have been so incredibly poorly at times that my empathy is definitely there. I’ve cared for family members and seen them at their worst- it’s in my second nature to want to help people, protect their mental health and make them better so being poorly myself and less able to do these things is hard.

Having had someone in your life who is very sick makes you a different kind of person. I still feel immense guilt when people help me with the smallest tasks, even if they’ve offered and I haven’t had to ask.

Fatigue is not tiredness:

Medically speaking, fatigue is not the same thing as tiredness. Tiredness happens to everyone — it is an expected feeling after certain activities or at the end of the day. Usually you know why you are tired and a good night’s sleep solves the problem.

GLAMOROUS!

Being so tired I physically poop myself as I cannot make it to the toilet (I can’t believe I’m saying this online!) now that is fatigue. Waking up after 28 hours of being asleep or a 15 hour ‘nap’ and not being able to see as my eyes are so dry- now that is fatigue.

Asking for help:

Carrying things, chopping things, stretching- everyday I have struggles which make me laugh as I’m unable to do what I should be able to as a 19 year old- sadly as people can’t see my illness sometimes I wish I was permanently in a wheelchair so people could see just how sick I am whilst at other times I laugh at just how determined I am to do things by myself. Use it or lose it as my mum says.

I don’t like asking for help but there are definitely things I need to accept I need help with. Mobility aids. I’ll definitely be doing a post on mobility aids in the near distant future.

Since my diagnosis of Tourettes Syndrome (which is incidentally still being researched as to whether there is something else the doctors are missing) people are starting to show concern- people worry as to why my tics are so prevalent, when in reality, the tics really are the least of my problems hahaha! My pain, fatigue, brain fog- now they are more of a problem. The fact I tic which causes migraines leading to me being sick for hours- yes that is a problem but the migraine is simply a symptom of the ME and the tics which cause me to lock my jaw move my arms and flare up fibromyalgia.

The only part of my illness that makes me sad is the fact that I am only 19- people would assume I‘d be out at raves till 5am when reality I go to bed at 5pm. I’ve learnt to accept this is my life for now so there is most definitely no point in being sad. I can still have a drink every now and then, it just results in a huge flare up and around 4 days. If I have a few drinks, although it usually is super fun, it takes about 40 spoons for that weekend and therefore recovery is needed- big time. other 19 year olds would’ve been able to spend all day out and about and then go clubbing, for me I can do 1/2 of one of those tasks at the detriment of myself the next few days. Yes, it is worth it for the memories but unfortunately having fun cannot be a regular occurrence.

I bit my tounge – it was a tic. It hurt. Layers of makeup still can’t hide the fatigue in my eyes.

#coping #ME #poorly #Disability #tired #InvisibleDisability #Chronicfatigue #CFS