CP related,  sick crip,  Uncategorized

>Oh how medical life is when CP’s in your world…

>It’s strange… I haven’t written here properly in over a week but I can’t think of anything that I do want to write here right now, now that I can again.

My appt with my GP to discuss depression issues etc went well, or at least as well as it could have under the circumstances. She really understood what I told her and set me up with a follow up appt with her in a month and also one with the nurse for what was meant to be an ongoing follow up/support. This was to help me a bit with my weight/diet as I feel like I’m trapped in a bit of a neverending story where for whatever reason I get depressed so I eat, then my mobility suffers so I get depressed and so on and so forth. It’s not just that which causes my issues but if I could break that cycle it would be a big help.

But my surgery doesn’t have facilities to weigh a wheelchair user if they can’t stand on the scales. I can stand on the scales, but I need to use sitting scales as my balance is poor and I can’t stand unsupported. If I am having a “bad” day my weight will show up as low as I’m leaning heavily on something and if I’m having a “good” day my weight will be a lot more as I’m able to balance on the scales more and take more of my weight myself. It’s disheartening but it’s a fact of my life.

Dr B completely understood that when I told her and went flying out of the room at almost a run to go and check if they did have suitable scales.

I told the nurse the next day and I thought she had too but then she said something that made me think “oh you so didn’t understand what I just told you.” and I explained it again, grrr. Still not convinced and she said a few other things which were sort of wheelchair user stereotypes or assumptions. She DID ask me to tell her abit about my abilities etc when I first went in which pleased me but then she said some stuff about not being able to exercise/be very active/get out of the house often which I shot down, down, down. So ugh, I don’t know. I go back to her next week and to be honest I think I might have just been annoyed about the scales thing and not receptive to her. I intend to write a letter to the practice manager about their lack of facilities to support a wheelchair user in weightloss/control when preventative medicine thru better diet and weight loss etc is such a huge thing in the NHS at the moment.

No counsellor this week, two visits to the surgery in one week was enough!

We sorted out an alternative CAB summer social yesterday. I don’t know if I will go. It’s being held at someone’s house and that brings its own set of issues/problems for me. I said that but added that with it being at someone’s house I don’t expect full access.

My confidence with walking etc has taken something of a hit since my accident in Madrid and I think it’s going to have to depend on how I feel physically/mentally a few weeks before (its not till Sept now). I had the comment made to me that I managed fine when we had a social at a different persons house last year and I did for the most part, and also they said they would be loads of people around to help me. Kind of not the point but hey… I think this has flagged up issues I face to my manager more and that diversity training is going to be happening later in the year at CAB. I hope to be involved in this somehow. Even if it’s just to say that my disability related concerns tend to get waved away/not taken seriously by others and have whoever does the training cover this area.

And once again, with this entry in which I said I didn’t know what to say, I had closer and closer to dooce-land. Shutting up about that now.

They used a hoist to get me in and out of the boat on Tuesday at sailing that was much better than lifting me. A couple of the volunteers were determined I was going to be lifted and were like “we need three people, two holding her legs and one holding her top half….” and I tried to say I’d been told there was a hoist and wanted to use it but they did not listen. Then another volunteer stopped them and said that he thought I wanted to use the hoist as we’d talked about that last week. I said “YES. I do.” And they got it and the sling (which they then put on me upside down and claimed it didn’t fit me…. Really filled me with confidence!) and got me in the boat. It was the first time I’d ever been hoisted which I told them. It was a little strange and you feel the straps go taunt around your legs as you get lifted up which is mildly uncomfortable but not painful.

I’m pleased we used that. They seem to prefer to lift people and said they haven’t used the hoist in forever before using it for me which is completely RIDICULOUS because not only could they hurt themselves lifting that could (and have, with me) hurt the person they are transferring if they lift!

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