So this post has been sitting in my drafts box for a while. I couldn't finish it as brain fog was making it impossible to keep my train of thought and then I have had another rough patch, I just had to concentrate on what I could do for a while, creating and a bit more creating and the awesome discovery of metallic sparkly acrylic paint :)
I wanted to write a snap shot of my life, I think it can be hard for people to understand chronic illness. You are 'seen' when you are 'well' and all the other bits are behind closed doors. And my realisation that even now I hide things when out in public.
So this snapshot was from last month starting Thursday 18 October:
I have had a lovely weekend and it was spent with amazing people, some who I have met before and some who I met for the first time. Since I joined twitter I have got into contact with lots of people who have ME and other conditions and through the vision of one person the first met was organised and it was truly an amazing event for the first time I could be around people and I didn't have to hide symptoms. If I couldn't deal with noise or talking, it wasn't a big deal. If I needed to step away I knew that would be fine. When the second meet was talked about I jumped at the chance to do it all again.
But it has made me really notice that I do behave differently when I am around people that understand and so sometimes I wonder if 'normal' people think that I use ME as an excuse, if I am really ill and disabled. Or they just think oh that's all about fatigue isn't it? We all get a little tired sometimes.
I look normal and there are occasions where you might notice that I am obviously in pain and walking slowly (ok more a sort of shuffle, with occasional little squeaks of pain that have escaped gritted teeth). I don't have any mobility aids (though I believe there are occasions that I should be on crutches). The only thing that you might notice is my Medic Alert bracelet.
But of course when you see me then I am 'ok'. As in its a good day/period and/or I am seriously masking some of the effects of my ill health. I put on the smile, the mask. I concentrate on what I am saying and often you will notice that I don't take part in conversations, not because I am not interested, or don't have anything to say. But because by the time I have got the words ordered in my head the conversation has moved on and I have missed the opportunity, it is very frustrating.
You might be thinking well then that's my failing I should make more of an effort. Its hard and when people see you stumbling for words they often want to 'help' offering suggestions which just makes me more muddled. Sometimes I slur and get lost with my train of thought and that again has its problems. I get wobbly, I get dizzy, I don't always cope with noise. I'm too hot or too cold. Going out can often feel like an assault on my senses.
I go out when I am well 'enough' or I take that calculated risk of the benefit over the consequences.
Its a different story in private and when I am at home.
So a snapshot of my life. Hopefully it will give you a little understanding. I don't choose to be this way.
Easy day and early to bed as I knew that I would be travelling to London on Friday.
Woke early, baked an easy make cake for Mr Mouse as I was leaving him home alone for the weekend.
Packed, had a rest.
Mr Mouse helped me to sort out the car and loaded my luggage.
Set off, with a planned stop for a break and timed that I would get to the hotel in time for a rest, have dinner and then a gentle evening with early night to ensure I was rested for Saturday.
The journey should have taken 2 hours instead several accidents meant that it took about 6 hours.
By the time I got to the hotel my head was buzzing, my legs ached and my anxiety levels were way up.
Hotel room too hot.
Sleep was limited.
Made sure that I ate good breakfast.
Made our way into London.
Meet up sat around talking over lunch.
Made our way to a museum.
Meet up in cafe, struggled with noise. Then a pianist came along, I love music, I love the piano but this was just the last straw as it made me feel like my ears were bleeding. We retreated to the galleries of the museum.
Made our way back to the hotel for a quick rest before dinner.
Still struggling with noise and tired.
Struggled to eat and hadn't read the menu properly - didnt notice the word spicy
Back to room, dizzy head spinning and stomach cramps.
Woke much later than planned.
Made sure I ate breakfast but struggled with mild shaking and took a long time to even eat a small yoghurt - due partly to energy and struggling to keep swallowing - body was not really interested in food.
Journey home was split into sections. Part one was a short drive to my Dads and then a long rest, then another visit to a family friend for another rest before the final drive home with rest stops planned into the journey. Thankfully no issues.
Mr Mouse took luggage out of the car.
Mr Mouse made me tea.
Mr Mouse helped me to get into jammies.
I then started coughing.
And some more coughing.
Then more coughing and the taste of blood.
Then more coughing and lung crushing.
It took a few doses of steroid inhaler (left over from last chest infection) to get breathing back under control and I was very close to having to call paramedics.
Severe steroid shakes.
Breathless and exhausted.
Throat feels bruised
Lungs thankfully clear (I dont want another chest infection), fresh inhaler prescription.
Over done it.
Bad case of dizzies leaving doctors, little old lady checked if I was ok.
Didn't have the energy to go to chemist, came home.
Mr Mouse had to look after me, I couldn't get about as moving caused coughing and breathlessness. Was also at risk of falling.
Throat still bruised.
Slightly breathless when I move about.
Neck grinding and stiff.
Legs hurt, feels like waves of fire.
Struggling to write this post have had to stop a few of times.
About to snuggle down, sitting up is starting to become intolerable.
Another day where moving about was interesting and fingers were crossed that I don't fall or bump into anything as I didin't really want a sprained 'something' to add to the list.
So that is my reality there are costs to be paid if I want to go to do something that I am sure a lot of people wouldn't even give a second thought too.
I have had a pretty rough month including some side effects of meds, period pain, extreme pain and the lowest moment I just everything to go away.
But though all that there has been joy, creating and sales :)