Thursday, 18 August 2016

The perceptions of others

I am a bit nervous to go home today. It feels a bit silly to feel like this. But the other day, when the postman was ringing our doorbell & I was too poorly to get out of bed to answer the door, I overheard the woman next door say something about me in a tone that was most disapproving. 

In the end I somehow got to the door on the postman's third try - but that exertion wrote off the rest of my day because my body hadn't been ready to move yet. 

Our neighbours either see me through the window in my pyjamas lying in the sofa, or they see me dressed and walking the two metres to the car. Sometimes I drive, sometimes I am the passenger. 

They must know by now that I do not work. Perhaps they wonder if I work from home. We have never chatted with them for long enough to tell them about my health. Yet I worry now that some of them may have made assumptions about me, because of what I overheard through the bedroom window the other day.

Rightly or wrongly, I feel ashamed and embarrassed to say that I have M.E. It is a label that does not evoke the 'correct' response in most people. The word 'tiredness' is the only word that springs to most people's minds when you mention it. Some go as far as mentioning the words mental illness and psychological. My heart sinks every time. 

The stigma attached to those two letters M and E is something I have spoken of often but to live with the knowledge that the majority of people still do not understand the severity or complexity of this illness can be quite disheartening and damaging.

I am sure that our neighbours have seen us go out on my mobility scooter or putting the wheelchair in the boot of the car. Yet it must confuse them to then see me appearing to be perfectly 'normal'.

My health fluctuates. At the moment it is mostly at the lowest end of functioning but for the most part I can alternate between 'good' days and 'bad' days throughout the course of a week. 

Invisible illness is tricky. I understand that. I also understand that if this hadn't happened to me I would probably be none the wiser to the battle that sufferers of invisible illness face. 

So I am nervous. Nervous and worried about the perceptions of others. Everyone says that I'm not to worry; that I have nothing to prove - that I know how poorly I really am and those closest to me know it too.

But letting go of this worry is so much easier said than done. Nearly six years in and I still feel like a novice at times like these. 

Wednesday, 17 August 2016

Setback City

I often think that this chronic illness life is harder for those on the outside; those who have to watch us suffering and care for us as best they can, all the while knowing that they cannot cure us or make the illness go away.

Those of you who follow my Instagram account will know that I am currently in Setback City. It's definitely not a relapse - if it was I would be back to having to sleep in my parent's old dining room and having to be wheeled to the toilet. But it's also not 'just' a crash or post exertional malaise - it's definitely worse than that and has already lasted a good few weeks. Still, it's all 'normal' and par for the course with M.E. 

I am being very well looked after, just as I have always been. Yet I am conscious of the effect this worsening of my health has on those who have to pick up the slack. I do very little to help around the house anyway but at times like this I am unable to even make myself some toast or a cup of coffee. I cannot currently drive or even leave the house easily. For every little thing I do there is payback. I'm not able to read my books at the minute or watch much television. 

In the same way that my parents always did, Mr Tree Surgeon takes it all in his stride and insists he doesn't need or want any 'time off' from looking after me, but I feel it is important to look after him and give him a break from it all like I used to try to do for my parents. Every once in a while I would go and stay the night with Not-so-big Sis for 'Respite Care'. For my parents it meant a night off from cooking for and feeding me. A night off from feeling nervous and worried while I took a shower incase I became unwell while I was in there. That kind of thing. 

Last week Not-so-big Sis came over to cook for me so Mr Tree Surgeon could go out for a meal with friends as planned. Why should he have to cancel plans just because I need babysitting? I'll never forgot the feeling I had when my mum had to miss a wedding because I couldn't be left on my own...

So I have come for a little holiday with Ma and Pa Jones at their new house. It's a change of scenery, a different sofa to lie on, a different garden to sit in... And it's all on one floor which is always good when your legs are so weak and almost too painful to use! 




A home from home. 







Saturday, 13 August 2016

Better late than never

In July 2013 one of my uni pals and I had tickets to go to an outdoor cinema close to home. At the very last minute I had to cancel, and by last minute I mean she's already started her hour-and-a-bit journey to see me. I was gutted. Properly gutted. I remember sobbing in the garden and handing our tickets over to Practically-older bro and his girlfriend s that at least someone could go and have a good evening. My health was making me cancel yet another plan, one that my friend and I had been so looking forward to it and yet again I felt I was being such an unreliable friend. Of course she was as wonderfully understanding and supportive as ever, but I was still crushed.

Fast forward to July 2016 and we tried again, booking tickets for the outdoor cinema held at Burghley House each Summer. And guess what?! We made it this time! 

It doesn't get more 'feel good' than watching Hairspray and Mamma Mia with the sun setting in the background, stuffing your face with picnic food, and sitting with one of your old housemates. If that's not a wonderful way to mark how far I've come in those three years then I don't know what is!