For the last few years I’ve never really fitted into the ME bracket – though symptoms are so diverse I suppose that doesn’t mean a lot 😉 I haven’t felt like I belonged with them for quite some time now, it’s all very confusing.
Take last summer, for example. The amount I was doing should *never* have been possible where I stand (or sit) at the moment. Going back through my archives, which are a bit patchy and I know have some things left out – particularly mundane things like going into town and I know I’ve left some hospital appointments out, but still. I really wish I’d documented more now!
Like July, that’s a very accurate example of what I’m on about.
7th of July was Cannington. The 14th was assistant Di’s birthday so we met the class to go for a walk along by the canal and have lunch. The 17th was West Hatch RSPCA’s Summer Fair. We went up in the morning and in the end stayed till well into the afternoon because I ended up showing Vale in the Prettiest Bitch class. On the 19th Di’s class came round to our house to do some work in my garden and then have a BBQ. On the 21st I went up to Selworthy for their fun day, I was also coping with a very poorly piggy, my Meg. On the 23rd it was Selworthy’s Leavers Service so we went up to school for that and then helped the staff pack up the rest of their classroom before coming home. On the 25th Meg got worse, I had her in the house all the time and I was syringe feeding her, looking after her..etc lots of added stress. On the 26th mum, dad and I went up to the garden centre to meet two of the kids from Di’s class and their mum. Meg died on the 28th July. On the 29th July Robert (another of the kids from Di’s class, he’s now left) came to see me. On the 30th I went up to West Hatch to help, cleaned out the rabbits and socialised some baby rabbits and hamsters, one of the hamsters I ended up taking home a bit later (Pinto). On the 31st I then took Vale out for a walk!
So let’s take that…and August was very similar (I’ll go into an abridged version of that in a moment)
7th – Cannington
14th – Di’s birthday
17th – West Hatch’s Summer Fair
19th – Di’s class came round, gardening & BBQ
21st – Selworthy’s Fun Day/Poorly Pig
23rd – Selworthy’s Leavers Service & Classroom Packing
25th – Meg got worse, lots of looking after
26th – Garden centre visit to meet twins and mum
27th – Took Meg to vets
28th – Meg died
29th – Robert came to visit
30th – Helped at West Hatch RSPCA
31st – Took Vale for Walk
That is just MADNESS. There is NO WAY I should be able to do anything like that. That’s not including anything I may or maybe not have done like any walks with Vale (I just happen to have a note of that one on 31st) or gone into town. Ok, now let’s do August – even more hectic. I’ll do it all in short this time.
3rd – Helped at RSPCA
5th – Helped at RSPCA
8th – Helped at RSPCA
9th – Introduced Molly (Meg’s sister) to her new friend, Boris. Had to keep checking on them.
10th – Helped at RSPCA
12th – Helped at RSPCA
16th – Went for walk with my mum, the twins and their mum. Came back home (it was raining) and had picnic inside!
18th – Watched mum move a couple of cupboards in my room, assembled hamster cage, had lunch with grandparents
19th – Helped at RSPCA
23rd – Helped at activity thing for 15-20yr olds with learning difficulties.
25th – Helped at activity thing for 15-20yr olds with learning difficulties.
27th – Helped at activity thing for 15-20yr olds with learning difficulties.
That is two months that should not be achievable for someone with anything but relatively mild ME, especially not at the level I’m supposedly affected. I really am just so confused at the moment, there doesn’t seem to be anything that fits me.
Yes the label doesn’t change how one’s is affected, but it changes the way you manage it. There might be medication to helps and the fatigue would be more a nuisance that interferes with my life rather than something which totally rules it.
Though having said that, ME is a neurological condition (which of course is why I’ve never seen a neurologist :roll:) so it could be that it’s gone more neurological in ways that it doesn’t normally. Whatever though, I am extremely untypical. I’m waiting for the appointment to come through for the neurologist, I’ve been waiting for months already.
If I’m honest I would think I’m probably frustrated, confused, overwhelmed and scared. I’m frustrated at being like this for so many years, confused by all these feelings, overwhelmed that suddenly lots of people are taking an interest in me after being left alone for such a long time and scared at what the neurologist might find, yet also hoping he’ll find something…
We’ve been doing all the right things and I’m not getting better, even the medics are starting to comment on how I’m not like any of their other ME cases. If there isn’t anything else then what will happen to me? Will I ever get better? If there is something they can treat it accordingly, yet what will it have in store…takes some getting my head around it all.
No doubt as things unfold it’ll be easier to take in my stride than to think about it all – it’s no wonder it all seems so overwhelming.
