BBB, you have been a massive support to me and i feel bad that all i can offer is grattiude, you have helped me through a lot of this, and for that alone, i owe you a great deal of respect.
However, i am struggling. I feel the healthcare support recieved has been poor, for example, being diagnosed with “ITP”, and being told next to nothing about it and sending me on my way, all i got was, there isn’t much to worry about as my platelet count was only just under, so maybe it is fine, but what im getting at is that i don’t feel im getting much help from doctors.
I ask to be refered to rheumatology the other day and all i got was “we’ve done all the tests, there’s no need to”, but bollocks, i’ll be making an appointment and they WILL be referring me, because Ive had enough of this.
It’s getting to the point where im losing the will to live, and some may see that as over dramatic, but im starting to get really dragged down by this and i can see it’s going to lead me down a really bad route where i could possibly end up leaving home and potentially harming myself, seriously, things are that BAD.
With pain management and all, it’s not excruciating pain, but it’s always something that fucking hurts me. Im going to read the link BBB has posted as im not underestimating the power of the mind and on occasions i have seen and felt what it can do to the body, so im more than willing to help myself as much as mentally is possible.
With regards to the mental aspect, i have been able to switch off and my mind feels more free lately, and im not so much as worrying about anything, instead, im not looking forward to the future, at ALL, at this moment in time i feel there isn’t one.
I feel i don’t want to go out and buy some clothes for an event in 4-5 months time, because honestly im not sure if im going to be here for then, and why so may say that sounds fucking stupid and family members saying “get a grip”, OR “there’s nothing wrong with you, moaning about nothing”, it really fucks me off, because even if it’s “All in my head”, the pain is very real and it’s really limiting my enjoyment of life.
Ive got an idea of what is wrong with me, and i can’t live like it. Maybe if i was getting on or fairly old i could accept it and just take what life throws at me. But, im 19. I haven’t even started living life yet and nothing is enjoyable, i enjoyed yesterday as much as i could, despite having 1hours sleep as i was really unable to sleep (insomnia?) and no it wasn’t excitment of waiting for santa claus, but bad timing.
Until i saw some family members for a few hours int he evening, i was in pain all day, my bi tendons were aching, aching and aching, and weren’t stopping. Didn’t notice pain as much in the evening, bit of neck and back pain, was sitting down most of the night.
Problems with SIJ, bit of ache there, i can live with, but i just can’t fucking deal with this no more, and im not prepared to live a life of suffering, i can’t enjoy things that i used to and everyday is the same, im desperate to feel normal again, i don’t think that will ever happen, i know that isn’t the right attiude and i know i need to be positive, but im losing hope, especially when i don’t seem to get no help from “doctors”, just fucking depressants and p killers which im not prepared to take.
Whilst i probably have come across as depressed from this post, it’s because of the pain, im tired of it. When im feeling ok, im not depressed, so it’s connected. It’s affecting relationships with friends and family, for example when i was put in a load of pain from going out for some christmas drinks the other night, it’s put me off ever doing that again.
When i went swimming the other week for half hour and came out with my whole back aching, it’s put me off swimming again. Even a lot of serious illnesses/diseases, surely exercise has a place of helping.
Things like not being able to sleep on the back of my head as it hurts, and having to sleep on my side, yes it’s a nuisance, but not the end of the world. Having raynauds which pretty much ruins making snowmen/having snow ball fights with my brother, again a real nuisance, but not end of the world. But for me, end of the world is daily suffering and feeling restricted to sitting ina chair and wlaking, when a year ago i was working out and loving life.
Even now the back of my head/base of skull is fucking aching and has been all morning, along with the glands it feels in my neck. If i were to be in a position to help my brother play with a new xmas toy on the floor my neck will start to hurt. I feel no one understands what im going through and at my age im not prepared to sit down and live a life of suffering.
I read a routine the other day and read a good post and thought to myself, i would LOVE to try that out. “Hopefully next year, i’ll be fine and things will be back how they used to and i could give it a go”. This year has been utter shit and the worse of my life, unless a miracle happens within the week and i start to feel like i have my old life back, i don’t want another year like this, and feel like i can’t, because im on the last straw.
I hate depression and negativity, i know how it affects other people listening to negativity all the time as i was on the recieving end of it, many times in the past from people and it really got to me, but i didn’t let it, I stayed positive and even when i was down about things, i kept a good mood, but this is a completely different story as back then i wasn’t in pain and didn’t have to worry about anything.
I mention my little brother a lot, that’s because without him i might of been dead all ready, and he is keeping me going, almost like a son in some regards with how much love there is, but at this rate, there’s not a lot left at me, an i feel there is no magical answer or solution, i feel like there’s almost NO WAY OUT.
Why can’t this just be something like lyme diesease, course of anti-biotics, bam.