This is going to sound like a rant, and maybe it is and perhaps I am just writing this for me to get some of the frustration out there, out of me!

Much of the time I feel like an utter fraud with my health. In my mind I can just do all the things I used to do, no doubt about that at all. 10 mile walk? No problem! Walk up a mountain? Sure, swim a mile? Yeah, not an issue! I can carry heavy things, I can run, I can jump, I can do everything I ever did before and then some.

So I get this disability benefits and think to myself that I shouldn’t be getting them, I am fine. Sure, I hurt like crazy every day and I feel tired all of the time but, that’s OK, I mean, that’ll clear up eventually, it’s just temporary, it’ll pass.

What I cannot accept, despite all the evidence is that this is permanent, I am actually ‘disabled’. Earlier I saw a job offered and thought to myself, I can do that, it’s easy for me a role like that. Sure, £10 an hour is crap but, why not? This is how my mind still works!

The frustration is, there is this huge gap between my idea of me and my reality.

Every day I have to push through the most basic of tasks, just thinking wears me out now. If I am out I feel the fatigue creeping in and know I have to leave right there and then else I won’t be able to drive home, it would be dangerous, I’d be too tired. Likely I’ve only been up after 8 hours sleep for 2-3 hours and that’s me done. So I’ll get home and I’ll force myself through where most likely would be in bed. Realistically, I know I am not going the day without sleep, if I didn’t sleep it would be dangerous for me to drive to collect Dennis.

Today I was ‘normal’, my interpretation of it anyway. I took Dennis to work then me and Daisy went to Milton Keynes, we did the Disney Store, had a coffee and then went off to Costco for some serious shopping. We overshot a little on the timing coming home so had to dash back, we’d forgotten we couldn’t go straight to the school as the back seats of the car were covered in shopping so we had to get that out. This meant me carry heavy stuff indoors in a hurry. Got home with the kids, had a cuppa, got a take out then got the kids to boys brigade in the village. We visited Robin whilst they were there then collected them and went home. I went out, collected the bins from the back and I’ll leave the positivity there and now mention what I left out.

The entire time in Milton Keynes I was using my mobility scooter, I didn’t walk anywhere. We had to stop on the way back because I needed a break, it’s only 30 minutes from Milton Keynes but I needed a break. Daisy had go with me to collect Dennis, I was actually way too tired and shouldn’t have been driving but it was my responsibility and someone with me keeps me alert enough to drive safely. I went to Robins because I would rather ask him in person to collect Dennis tomorrow because, I wouldn’t be able to. I nearly fell trying to collect the bins and Sean rescued me. I caused myself unbearable pain doing it and couldn’t use my left arm for a while.

By 10:30 I was mentally awake but in every other way, I was exhausted so went to bed. At around 2am I woke up again unable to sleep because of the pain and the sweats that I all too often get even when everyone else says it’s chilly. 3:15 and I am still awake and not feeling sleepy. I have taken the strongest pain relief I can but still hurt like crazy. I am also as itchy as can be and have sores in various places which is very uncomfortable.

Friday I know I am going to continue in my melt down, this always happens if I try ‘normal’, the next few days are just really unpleasant. To clarify, I am not depressed or anxious at all, this is pure frustration. I am so looking forward to Christmas, to making plans for next year, it’s going to be great.

Next week I hope to start an exercise course in Daventry, building up slowly at a specialist centre to try and loosen me up again. It’s what they do there, they take sick patients and work them through whatever they can do. Notice how I instinctively didn’t type ‘us’ there?

But, I like my frustration, it means I keep pushing, keep fighting. I am never not going to hug or play with my grandchildren!

The most frustrating part of this frustration is it makes me grumpy sometimes, not fully able to let matters ride. Generally, when I get like that, this is when I relent and sleep. It’s not anyone else’s fault I am like this, or mine for that matter!

I know tomorrow I am going to be screwed but, we are having steak for dinner dammit! Daisy, did I mention we’re having steak? I may even get my new glasses ordered again, maybe!

Now, I am only wearing my underwear and my dressing gown but am sweating loads, should I just go sit in the garden for a bit? It’s 2°C out there so it might cool me down enough to get some sleep. I can feel the pain relief having some effect now.

I know I shouldn’t have to do this but there are some evil people in the world … All that stuff I wrote about mountain climbing, swimming and so on, that’s in my mind, I can’t actually do that so, hold off on the reporting to the DWP fraud line!

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