Keep the looks to yourself... rant

It has been a while since I have updated here because it has been really intense since I had the hip blocks. There are but a few words to describe that little ordeal.... HOLY MOLY CHEESE AND WHISKERS has it made things WORSE!! Dear Lord the pain, it has this way of making me think it is the worst it could possibly be then it gets WORSE. There have been days since the hip blocks I think it is going to cost me my sanity! I'm doing my mindfulness exercises to try to put it into perspective and not let it make me anxious but boy this is BIG pain now all the time, I seem to be stuck on an 8-10. It's that sort of all consuming pain that makes it harder and harder to put on a brave face. Last week I thought I did pretty well at getting on but two separate people said to me "Are you ok? I saw you the other say from a distance and you looked really ill/tired"

I have had two hospital appointments in London (which involves a lot of travel from Dorset) which hasn't helped at all (physically) although both appointments have been really positive. You know, as positive as they can be when you have a chronic disease! Haha! ;-)

I now know that the Hypermobility Syndrome is 'extensive' and 'significant' and that it is affecting pretty much my entire body significantly bar my elbows (go elbows! woo!) I have been referred on to see consultants about my eye sight, my feet, my hands and my bowel. I have also been referred to hydrotherapy, a programme especially for people with HMS and EDS and will possibly be sent for in patient rehabilitation. It was the first time (bar my fabulous hip specialist who I started seeing in August) that I have felt I have really been listened to by a consultant at hospital. Not only did she listen she confirmed and affirmed everything that I said about the way my body works and feels and the crazy things it does.

It was also confirmed that the surgery I had on my hip last year will have definitely made my right hip worse and that isn't in my head. I KNEW it was worse but explaining that to people can be really frustrating.

So why the title of this blog? Well, I want to have a little rant. I am not one for ranting or confrontation or 'telling people how it is' in fact I generally shy away from all three HOWEVER here I go...

There are some people sadly who feel that it is their right to judge a disabled person because CLEARLY they can tell the persons extensive medical history just by looking at them and they're not sick really are they? They are just lazy. They believe they have the right to decide that if a person is in a wheelchair or on a mobility scooter they aren't equal to them and it's ok to treat them differently. (Not at all helped by our current governments attitude to disabled people)  Well guess what? (If you are a decent human being, as I'm sure you are, you will know the answer to this!) The person you are looking down your nose at has as much right to be where ever it is you are as you do and they have feelings too. Giving them a 'oh you disgusting non human' look will likely stay with that person all day and I see absolutely no need for it.

It's typical bully syndrome. They pick on people 'weaker' then themselves who wouldn't have a fair chance of 'fighting' back and it is outrageous. God I wish I had the strength in me to stand up for myself when people make crude remarks or give me filthy looks. I wish I could publically shame them for the discriminative nasty's that they are but I am yet to build up the 'thick skin' required to deliver such a come back.

People are shocked and taken a back when I tell them about the 'looks' and the comments that I get but it happens all the time, probably once an outing and it's making it really difficult to want to go out. I LOVE my home town and I have always got such a buzz from being out and about in it but when the pain is physically as bad as it has been recently it's really hard to potentially set yourself up for a dose of emotional pain! I get a lot of 'You have to keep going out and learn to live with this' from people who don't necessarily understand that it isn't as easy as that and I know their intentions are good ones but what I really need are people who will say to me 'Don't fancy going out today, I'll come to you'

Back in the spring I would find it really hurtful that people would actually get cross and become distant with me if I said no to an invitation say two or three times and I realised they gave up on me altogether but especially when the town is full of tourists it's really hard to find the bravery to head out, throw in the brain fog that is triggered by the stress of getting such looks and comments and a simple coffee or nip to the shops can turn into an overwhelming experience!

I am going to have to be really kind to my body this week and take it really easy physically. I am working on not equating what I can do physically to how I feel emotionally and have started doing more small scale crafts again so I can sit on the bed and give my body that physical rest it desperately needs when the pain is this bad but keep the old brain engaged in nice things! I will also hopefully have more time and energy to start writing this daily again. I don't want to just update it once or twice a month!

Blessings x x