I have a diagnosis of disability involving every part of my body and it’s very, very complicated and complex more than I can explain in words. It’s not just a physical disability - the muscles, bones, tendons & joints are all affected in every fibre and I fought for 16 years for a diagnosis. From my eyes to my toes with all bits in between.
Received it 4 years ago and now take 18 pills a day and a weekly injected biologic, am under many consultants and as of this week was also told brains scans are needed on top of my usual consultations. When I get a cold it turns into bronchitis then pneumonia, when I get a tooth infection it usually results in the tooth being extracted, sinusitis lasts for 4 mths and takes 4 lots of antibiotics, steroids & nasal drips. I’m bloody sick of being me. I use crutches first thing in the morning but am fine by the time I leave the house but by my childs bedtime I am absolutely shattered, physically and emotionally.
I have had to give up f/t work but still manage 10 hrs p/w and DH does what he can workwise and looking after me.
I manage to walk DS to school and back (9 doors away) and you wouldn’t know by looking at me because I’ve loosened up by then & I’m so glad to be out of the house that I’m actually smiley and feeling sorry for myself. I think.
FB I don’t really use but the only time Idid post was full of ‘Just shout if you need me’ so I did and wish I hadn’t. Nothing but ‘Sorry I’m too busy to have DS so you’ll have to take him to your appointment’ or ‘Sorry we’re planning a lazy day’. I had a few private messages from 3 even saying that they NEEDED childcare & asking if I could have THEIRS so they could work yet my income due to this shitty situation is now just benefits and DH’s basics 
I can’t afford to feed theirs, let alone have the energy?
Had a run-in with DS’s Headteacher yesterday about how he can’t hear in class and all I got back was that I shouldn’t be questioning his staff 
so I reminded her that they have information on file from the hearing tests and surprise surprise it’s not been acknowledged.
I’m no good to man or beast and it just feels like my life insurance money would be more beneficial to my child than me. We can’t claim on the Critical Illnesses part because this condition is excluded from the policy & we can’t claim the Permanent Disability C/I part either because it comes under the T’s & C’s of the exclusion that it affects every part now. (It didn’t when we took it out)
So I keep coming back to death. And I know I shouldn’t. But I’m no good now and the money will give him so much more than I can. All I do is sit and cry. And I know you’re all going to report this post, I’ve been on here long enough to know that.
So what do I do now moving forward to get some confidence and some of the old me back? So bloody sick of hurting and being locked in this body full of negativity which I never used to be. I’m snappy and short and not communicating properly. I’m losing people because I just get gobby, they say they understand but they have no clue at all.