Bear with me on this post. I think I am trying to make sense as to why I feel worse right now.
Yesterday I went to the hosp with the oh whilst my mum looked after H. My appointment yesterday was with occupational therapy, for those who don't know what they do, they basically provide aids and ideas to help you be a little more independent when disabled.
The woman was lovely. Did feel sorry for her as she was the only rheumatologist ot in the department, ridiculous and probably due to cuts. Any way she gave me two different types of supports for my wrists one with metal in and one without. As the metal ones are to restricting to do certain things i.e. use my crutches.
Then as we were talking it was obvious that I needed tuby grip for my knees, the reason for this they have really flared and are swollen. Normally I would go to the rheumy nurse, however, like the ot said not much point as until I have been seen by the surgeons no-one is going to touch me with a barge pole for fear of making things worse.
So then it was also decided that one of those things that picks stuff up off the floor would be useful. Bit grannified to me, but I can live with that.
So then she also comes back with a sponge on a stick, for when I am in the shower. God this is getting worse by the moment. So she then also says a bath board will come in handy because I can't get in and out the bath which is where the shower is at the moment. So means I will be able to have a shower sitting. Then she also suggested us getting a second banister rail installed so we are getting on to the modern housing solution team.
Then came the absolute crippling, wish the ground would open up and swallow me moment. And I am so going to blame my husband. He's talking about how I can't use my crutches that often at the moment and how getting about the house, even though at the moment its mainly from the bed to the bathroom, is difficult. Especially after I have taken my medication, I get spaced, my limbs go like jelly. I also have another problem with my legs which I will get on to in a moment.
So I am sat there and the hubby turns to me and says 'I am sorry babe but needs to be done..' turns back towards the ot, she replies with a knowing look. I am oblivious to whats coming next. She says 'I know what you are going to say, was just thinking myself a walking frame'.
As she goes off to get said 'walking frame' I don't know whether to bloody laugh or cry. I don't know whether to kiss my hubby or kill him. Confused and feeling I suppose shallow, I know I don't want it. Just like some of us don't want glasses, but I also know in my heart of hearts I need it.
She then gives us a leaflet and tells my husband that he needs to get me a wheel chair so that once a week I can get some fresh air and get out the house. I feel like its a new low. Its been a long time coming, but I don't feel I have the fight left in me anymore.
So I get back home, Mum is outside the front door giving moral support, by trying not to wet herself laughing. As we were browsing through the catalogue mum and me were making a joke of things. Trying to lighten the mood and it worked. Especially when she turned around and said. 'Its ok Em, Will get you some tinsel for Christmas to put around it!!'
So that set me thinking. I do want to liven it up a bit, personalise it. Make a joke of it, whatever, something whereby when I look at it I don't feel like an 80year old. Before I could ask any of my friends someone who I speak to on BritishForcesSweethearts, a website I have used since being with my husband, asked if she could make some crochet flowers for it to tie on.
Now I have never met this girl in my life. When I had my baby girl she sent me a beautiful blanket that she made herself. And now, even though she has her own problems going on she wants to do something like that to cheer me up! It once again made me smile. Especially when one of my other friends said that we should all get mobility scooters and race one another. Dealing with this via humour is the best way.
But I still have moments where I cry, and I sob, with big fat snotty tears running down my face as I try to explain to my husband how humiliating this feels right now. A week or so ago a new symptom started. My leg jerks uncontrollably can be from a few seconds to nearly half an hour. Now to start with it was only when putting weight on it. But has since happened when I have been laid down.
Its soul destroying to think that you have absolutely no control over your body. It took me nearly half an hour to get to the bathroom which is pretty much opposite our room last night. Because both legs were jerking uncontrollably and my hub had to keep catching me before I fell.
I told him last night I would understand if he wanted to leave. Whilst our vows were for better or worse. I don't think either of us envisaged something like this happening, especially so young and before our first anniversary.
Moving on to today. The Father in law was coming down, so hubby helped me in and out of the shower, washing my hair for me, because I couldn't even lift my shoulders that high. Then dressing me. You would never guess I am 24 by the way things are going. So I slowly made my way downstairs and used my frame to get about.
After about 15mins of my father in law showing up, I had to excuse myself to take painkillers. Knowing that that's me done now for a few days. So again I am led in bed, alone. Wondering and waiting what time the hubby will be up. Feeling lonely and very sorry for myself. I cant blame him we have company. I kept apologising to the hubby worrying that his dad would think i am being rude or ignorant.
So later on the hub came up to have a fag with me and said that he had said to his dad did he have a problem with me being up here. His reply was no, why is she feeling left out? Other half said yes. To start with I was like no that's not what I was getting at. But now once again with too much time on my hands I am realising yes that is a problem, I am being left out of a lot of things at the moment. Because I can't do them
I'm going to leave it there because I feel like I am going to really sob again soon. I hope the anti depressants kick in soon. I just have to keep reminding myself of the reason that I have to stay with it and get better...