Occupational Therapist.

Back in September 2010, Mr had lost his ESA claim and had been put on JSA. His health was deteriorating on it, and he started using a walking stick which we got from my late Grandad.

We started trying to find a way to get him one on the NHS, and were referred to the ME specialist.

We saw the ME specialist January 2011, and after being told there was nothing they could do for him, he was signed off to a local physiotherapist, supposedly to have a look at his needs at home.

Eventually an appointment came through, but we had to go in to see her (late last year I think?) because she couldn't do home visits.

By this point, Mr's first walking stick had broken, and he was (and is still) using a hiking-walking stick of his parent's.

The physio was useless, told him that passive exercise and massage are useless (but we know that when you can't move independently it's really very good to keep moving) and said she couldn't help. But referred us to have an OT come visit us.

She came this afternoon.

Another person who couldn't understand that the specialist wouldn't see us. Couldn't help us. Another person who claimed knowledge in ME, but couldn't understand why Mr has a weak neck, or why he has pain everywhere. Another person who doesn't understand that you just have to muddle through and push through how rubbish you feel just to live. Another person who went on about pacing, and didn't understand how we could know about it if we'd never been on a course… I wanted to walk out in tears.

Heck, she was even trying to convince Mr to spend all his time sat in a dining chair because it would be easier to get in and out of, completely missing the point that he can't sit in chairs like that :|

The medical profession are generally "nice" to us. But they'e useless. And they have all formed such opinions of what ME is, and how to manage it, with no thought as to the people who actually have to live with it day in, day out.

We are getting a shower board to try. And she's supposed to be referring him to someone else to get a walking stick. But she couldn't help us with getting handles to hold on to in the bath. And she couldn't help get him supports for his body when sitting. And honestly? She didn't get ME.



In other news, I've had my ESA form for 6 days of my 4 week time limit, and I haven't even started it. I've had a virus since the day it arrived, and only today have I been able to move my eyes without pain :(

Extra Demands

I released this week, that we live a very fine balance in life. We each know how much we can do, and how much the other can do, and we pick up the pieces in quite a smooth way as we go along. Neither of us likes pushing the other too far, but I think we learn to accept that sometimes we're just not capable of something.

Mr had to go to the drs on Monday morning. He needs more Ritalin to help his ADD, and we're trying to get a home physio. Neither are yet realised, but we have to keep fighting. I was supposed to go in case his brain fog kicked in, but with my increased pain levels and anxiety around drs he let me stay home.

I first knew he was home when I got a phone call from him - he sounded very rough and was sat, or should I say, stuck, in our car. He'd just been sat there on his phone, and he felt a stab in his back, and now he couldn't move.

We managed to get him into the house and up to bed - he couldn't even straighten his legs. My mind went a bit overactive, but at the same time I pulled on God's strength. We phoned his Mum, querying whether I should drive him to A&E or not. It was decided we contact the very dr he'd just left, and wait for a chiro appointment. When the dr eventually called back, she told him to double his already strong painkillers. He was able to straighten his legs by bedtime.

I felt very lonely with him stuck in bed. Everything was left to me, which is where the realisation of how balanced our relationship is hit me. We'd previously decided to do our own dinners that night, and there I was cooking separately for both of us!!

Tuesday he made it downstairs, and he even helped cooked dinner - a blessing since I was too exhausted. His Mum provided it for us though - another blessing!

Today… He managed to drive to the chip shop - neither of us were well enough to cook. He really can't sit up for more than a few minutes, although his back is comfier when lying.

I suppose it's just a bit lonely. And it's silly, cos he has to spend a lot of time in bed, but normally I know he can make it downstairs, he can sit and play a game, he can bend to pick up a bunny… But right now he really can't, and that's a new balance to find until he's better.


His emotional strength never waivers though.

I am supposed to be being referred to our local ME specialist, who saw Mr earlier this year. I haven't given the family histories, and our personal ME stories yet - I really must… But let's just say I've been ill for 11 years; have 2 siblings, a sister-in-law and a husband with ME - I know how it works and how to manage it. I got my diagnosis 7 years ago.

The letter that I received through the post today kindly confirmed that diagnosis (big surprise), although called if "Chronic Fatigue Syndrome". That doesn't make me feel at all positive towards them, but it's not the worst bit.

It went on to say that because of this I have been, and I quote, "fast-tracked" to "group therapy".

Now, I know I have anxiety issues. And I'm on treatment for depression. And I can become very stressed. But seriously?! I have been living with this illness 24/7 for 11 years of my life. I know how to manage it. I might not have made miraculous improvements, but I have had a very enjoyable life (I'll have to post my pacing v. enjoyment discussion at some point too…!)

And you know what? Instead of going along to a meeting which would 1) make me very angry, 2) be utterly pointless and 3) make both me and my husband very ill; I am going to "manage my ME", and not put me and my husband through sitting up for TWO WHOLE HOURS before midday.

Thankfully I've pretty much gone from anger at the letter to laughing at it, but still… I was hoping for this specialist to support my benefit claims!!

P.S. I include a logo of our name at the end so you know which of us is writing. I don't know if Mr ever will, but the option is there :)