As the cold weather comes in for most pain its just not good and as this winters cold weather arrives my pain increases and still theres nothing i can do. I still don't want the sympathy all i want is it to be over to fade away but as thats not going to happen i just have to get on with it and try to keep my pain down mind over matter but thats not going well. its not mind over matter its buck up and dont let them see how much im being crushed, head high and breath. easier said than done especially with life hitting you with other issues.
I need it to stop
Monday, 18 December 2017
Thursday, 7 December 2017
well....
So im waiting for everything to get on track. i saw a doctor yesterday and as i haven't seen her before we had to go through everything but she only went off of what was written down in afew appointments before so kind of pointless. i went there because i have got my hc2 certificate so i could finally get some meds to help cope with the pain and maybe help me feel 'normal' again or at least so i don't feel the weight of the pain pulling my in and trying to rip me apart. i want a moment a single moment where the pain goes or at least fades into the background so i can wash my hair without having the pain take over and i have to rest or even so i can walk up some steps and not want to crash through them. i went to the doctors to see if i could get some medication that they haven't already tried and had them not work but the doctor just said that she cant she needs to read my notes and get back to me sometime in the new year i cant cope till then i struggle with my days as it is and im still being told to take some medication that doesnt work that ive had before. im trying to continue to do my physio help outs but im struggling to do that. i got so bad the other day that i did take a different painkiller that wasnt pescribed to me but it helped to get me to sleep i told the doctor and she said oh well thats not used to help with fibro and i said well it helped but she still ignored me.
I dont know anymore i dont know how much longer i can hide my pain or how much longer i can cope i want to function like a person i want to be able to do things and not be held back by a condition.
I dont know anymore i dont know how much longer i can hide my pain or how much longer i can cope i want to function like a person i want to be able to do things and not be held back by a condition.
Wednesday, 22 November 2017
Enough???.....
Ive been up to the hospital to have my 'physio' assessment and meet with the team up there they were brilliant and understanding but I think ive had enough of all of this. enough of doctors enough of councillors enough of people who just don't understand. i don't want sympathy, i don't want to be seen as broken or as someone who makes excuses because they cant do things all because there body wont let them. but my body does hold me back and it is painful and ive had enough.
my life being back home hasn't been brilliant. i have to hold back my feelings, my pain i have to go back into my shell. i try and help them understand but its al ways met with 'everyone has pain' ;your dad has back issues he copes' when i was given the unfit to work letter i had an aunt say 'ill swap you my back' from family i have also been told 'you do nothing all day' 'your just lazy' 'you make that look a lot harder than it is'.
i would give anything to not have pain even for 1 moment and that 1 moment would mean everything to me because i don't remember not having pain i don't remember feeling free instead i feel trapped in my body trapped and in prisoned in pain every movement every moment pain tries to take over me and it wins sometimes i'm strong enough other i just have to fake a smile and laugh.
My bf is sweet and loving and he would do anything for me and he's proved it countless times. when i was throwing up he was there holding my hair and putting it up, he held me when i was crying, he caught me when i passed out on him a few times. when i'm with him he understands he helps and supports me when i'm at my lowest. when i feel alone i text him and no matter what he makes me feel better. the random 'I love you honey' texts and 'morning beautiful' always makes me smile. i don't always tell him everything about my situation and pain levels and how bad i feel but i don't want to be seen as less of who i am and seen as broken as i feel. he is worth so much more but he doesn't see it. I truly love him with all my heart and i don't know what i would do with out him and i pray i will never have to find out.
my life being back home hasn't been brilliant. i have to hold back my feelings, my pain i have to go back into my shell. i try and help them understand but its al ways met with 'everyone has pain' ;your dad has back issues he copes' when i was given the unfit to work letter i had an aunt say 'ill swap you my back' from family i have also been told 'you do nothing all day' 'your just lazy' 'you make that look a lot harder than it is'.
i would give anything to not have pain even for 1 moment and that 1 moment would mean everything to me because i don't remember not having pain i don't remember feeling free instead i feel trapped in my body trapped and in prisoned in pain every movement every moment pain tries to take over me and it wins sometimes i'm strong enough other i just have to fake a smile and laugh.
My bf is sweet and loving and he would do anything for me and he's proved it countless times. when i was throwing up he was there holding my hair and putting it up, he held me when i was crying, he caught me when i passed out on him a few times. when i'm with him he understands he helps and supports me when i'm at my lowest. when i feel alone i text him and no matter what he makes me feel better. the random 'I love you honey' texts and 'morning beautiful' always makes me smile. i don't always tell him everything about my situation and pain levels and how bad i feel but i don't want to be seen as less of who i am and seen as broken as i feel. he is worth so much more but he doesn't see it. I truly love him with all my heart and i don't know what i would do with out him and i pray i will never have to find out.
Week ago...
so i had an assessment with a mental health team i am now waiting to hear back from them.
Im going to have an older sibling rant now so sorry-
i am the older sibling of 2 sisters and a brother i am 21 i had to move back home from uni and am finding it hard to get a job with my health issues but i am trying. everyday i find doing the most simple things hard and no one in this family understands they all just call me lazy and stupid and that its all in my head. Every time all i want to do is cry i want them to understand but i fear they never will.
Im going to have an older sibling rant now so sorry-
i am the older sibling of 2 sisters and a brother i am 21 i had to move back home from uni and am finding it hard to get a job with my health issues but i am trying. everyday i find doing the most simple things hard and no one in this family understands they all just call me lazy and stupid and that its all in my head. Every time all i want to do is cry i want them to understand but i fear they never will.
Monday, 23 October 2017
Why.....
Im always saying to not do research on a health problem because you never know what might pop up and it usually makes it worse. My doctors told me to do research and to read about other peoples stories and i have but it just makes me want to cry. fibromyalgia is an 'invisible' illness and a lot of people dont know what its like my heart goes out to the people who have these types of illnesses.
why did i research?, why did i look at all the other symptoms? and why do people not understand?
Everyday is a fight and its not the same you wake up and think what will it be today? how will it effect me? and all of the time you carry the guilt around with you.
I am constantly feeling guilty, guilty for the fact im a burden i cant do what they can do. i need help but i dont want to ask. i feel like i drag everyone down but i have to wear a mask showing them one side and lying to them about the other.
Sunday, 22 October 2017
Understanding...
I don't know how to start i don't know how to feel. Everyone around me, my family and friends they don't understand what i'm going through what my body is doing how heavy and sore it is. I just want to crawl away from it away from the pain and the heartache. Every time i'm sat down or laying down to try and get some relief from the pain and from the tiredness i get called lazy but i'm not i'm fighting my body my mind if fighting its own battle and my body is fighting another.
As i get older, especially since ive come back home ive noticed something, i'm jealous. Jealous of everyone of them being able to walk around without feeling like there weighted down without feeling pain serge through there body with every movement and jealous that they can get any job they can apply for where as i have to have boundaries all because i'm unfit.
Isn't it sad when you finally realise that you don't remember what it feels like to not feel pain at every moment. when you have forgotten how to feel free instead of caged in your own flesh. i joke about it but i don't know how much more i can take.
As i get older, especially since ive come back home ive noticed something, i'm jealous. Jealous of everyone of them being able to walk around without feeling like there weighted down without feeling pain serge through there body with every movement and jealous that they can get any job they can apply for where as i have to have boundaries all because i'm unfit.
Isn't it sad when you finally realise that you don't remember what it feels like to not feel pain at every moment. when you have forgotten how to feel free instead of caged in your own flesh. i joke about it but i don't know how much more i can take.
Saturday, 21 October 2017
My story....
How do i start my story so far...
from the beginning but not where you would think, not from birth or from the start of school but from year 9 i was 13 or 14, it was the end of the school day and i was still considered the new and odd girl who kept to herself in the back of the class. As the lesson came to the end everyone had packed all there stuff and started to get out of control but the supply teacher that we had, had given up trying to control the class. At the back a few of the boys decided that it was a good idea to pick the solid wooden stools up and shove it at each other (like knights jousting) however as the bell went i was caught by the stool and had it shoved into my ribs causing me to fall back, i tried to turn but it all happened so fast that i ended up falling back on to the solid oak work table i must have hit my head because the next thing i remember is looking up at the ceiling tiles. when i had gotten up i went home as if nothing had ever happened because i didn't think anything of it but about a week later i noticed i was having trouble with movement and pain but i still didn't think anything of it however i did go to the doctor and they gave me medication.
That happened for about a year- the medication wouldn't really work or it would stop working and i'd have to go back and they would then try something different. it was only after a year that a doctor booked me in for an x-ray only thing was that it had been a year so nothing showed up.
more medication and blood tests and still nothing the theories of different doctors kept getting told to me but i just wanted the pain to go away, i wanted to be normal again. i started to get depressed and ended up in concealing.
when my GCSE's started it was hard i had to juggle my pain and make if look like i was fine on the outside but i was crying and crumbling on the inside in this time my grandma had also died she was someone who meant the world to me and when the second lot of cancer finally took her i was crushed everything felt 10x worse. i was struggling with anger and depression and my anxiety i felt like i was in a box that was getting smaller every moment crushing and squashing me only giving me enough room to breath every now and then. My art helped me in some ways, i had theses two little note books that i ended up filling with strange and dark drawings but that was my way of showing myself to myself showing that i'm still there if only through a pen but that wasn't true i was gone, my life my story had changed i had to be stronger i needed to hide i needed to get on.
Age 16 My A-Levels two years in total. in these two years i meet the most amazing bloke who i could tell everything to he didn't judge me he made me feel safe again. at the end of my GCSE's i had started to self-harm, not for attention but so as i could feel different pain i was sick of feeling one sort and wanted to have a break from it. He made me stop. in these two years i was still doing physio and still seeing the doctors for different medications, i stopped concealing and started CBT (cognitive behavioural therapy). Age 17 on my birthday i had an MRI nothing came of that so more meds and more trials. I had more bloods done like i have had for the past few years only this time it showed an iron deficiency so more iron was needed.
Off to uni age 18. The first year i was on my own in a small bedsit type thing. I had to go to a new doctor and start again with everything. The second and third year i was sharing a 2 bedroom ground floor flat. Over the three years my pain got worse and with everything adding on to it there was some problems and some things that i had to get around. Through my time i also had many different blood tests done my iron deficiency carried through and i ended up having a problem with my vitamin D so i had to take tablets for that. i had massive stomach issues that made me throw up constantly it got so bad that i wasn't able to take any medication so my pain was unbearable that i couldn't move with out crying in agony i made a doctors appointment he then booked me in for an endoscopy and gave me some anti sickness tablets to tie me over so i could have some type of relief. In my third year i had an MRI with that liquid stuff but nothing was shown through. i got a job a pizza hut to try and see if i could be 'normal' and to see how much i could cope with. the staff was amazing and the managers knew and understood what i was going through. I lasted 3 months. 2 whilst i was living in the same town and a month when i moved back home. However every shift i was on i was in agony sometimes on my break i would go into the bathroom and just cry but i struggled through until i couldn't anymore and i had to quit and was proven that i couldn't do it, it was another thing that my back will get in the way with.
After my three years i moved back home and back to my old doctors surgery still without a name or a helpful idea of what was happening. So i mad an appointment. At the appointment the doctor booked bloods and another appointment i got the bloods back and nothing but my normal bloods, borderline normal. The other day i had my second follow up appointment this time to doctor called in another doctor for his opinion we went through everything all my medical history (the appointment lasted an hour) he said that with everything it does sound like fibromyalgia with all of my other symptoms, so that is now the route that we are going to look down. I now have to re-book CBT to see if more can help.
And that is everything so far - i think...
from the beginning but not where you would think, not from birth or from the start of school but from year 9 i was 13 or 14, it was the end of the school day and i was still considered the new and odd girl who kept to herself in the back of the class. As the lesson came to the end everyone had packed all there stuff and started to get out of control but the supply teacher that we had, had given up trying to control the class. At the back a few of the boys decided that it was a good idea to pick the solid wooden stools up and shove it at each other (like knights jousting) however as the bell went i was caught by the stool and had it shoved into my ribs causing me to fall back, i tried to turn but it all happened so fast that i ended up falling back on to the solid oak work table i must have hit my head because the next thing i remember is looking up at the ceiling tiles. when i had gotten up i went home as if nothing had ever happened because i didn't think anything of it but about a week later i noticed i was having trouble with movement and pain but i still didn't think anything of it however i did go to the doctor and they gave me medication.
That happened for about a year- the medication wouldn't really work or it would stop working and i'd have to go back and they would then try something different. it was only after a year that a doctor booked me in for an x-ray only thing was that it had been a year so nothing showed up.
more medication and blood tests and still nothing the theories of different doctors kept getting told to me but i just wanted the pain to go away, i wanted to be normal again. i started to get depressed and ended up in concealing.
when my GCSE's started it was hard i had to juggle my pain and make if look like i was fine on the outside but i was crying and crumbling on the inside in this time my grandma had also died she was someone who meant the world to me and when the second lot of cancer finally took her i was crushed everything felt 10x worse. i was struggling with anger and depression and my anxiety i felt like i was in a box that was getting smaller every moment crushing and squashing me only giving me enough room to breath every now and then. My art helped me in some ways, i had theses two little note books that i ended up filling with strange and dark drawings but that was my way of showing myself to myself showing that i'm still there if only through a pen but that wasn't true i was gone, my life my story had changed i had to be stronger i needed to hide i needed to get on.
Age 16 My A-Levels two years in total. in these two years i meet the most amazing bloke who i could tell everything to he didn't judge me he made me feel safe again. at the end of my GCSE's i had started to self-harm, not for attention but so as i could feel different pain i was sick of feeling one sort and wanted to have a break from it. He made me stop. in these two years i was still doing physio and still seeing the doctors for different medications, i stopped concealing and started CBT (cognitive behavioural therapy). Age 17 on my birthday i had an MRI nothing came of that so more meds and more trials. I had more bloods done like i have had for the past few years only this time it showed an iron deficiency so more iron was needed.
Off to uni age 18. The first year i was on my own in a small bedsit type thing. I had to go to a new doctor and start again with everything. The second and third year i was sharing a 2 bedroom ground floor flat. Over the three years my pain got worse and with everything adding on to it there was some problems and some things that i had to get around. Through my time i also had many different blood tests done my iron deficiency carried through and i ended up having a problem with my vitamin D so i had to take tablets for that. i had massive stomach issues that made me throw up constantly it got so bad that i wasn't able to take any medication so my pain was unbearable that i couldn't move with out crying in agony i made a doctors appointment he then booked me in for an endoscopy and gave me some anti sickness tablets to tie me over so i could have some type of relief. In my third year i had an MRI with that liquid stuff but nothing was shown through. i got a job a pizza hut to try and see if i could be 'normal' and to see how much i could cope with. the staff was amazing and the managers knew and understood what i was going through. I lasted 3 months. 2 whilst i was living in the same town and a month when i moved back home. However every shift i was on i was in agony sometimes on my break i would go into the bathroom and just cry but i struggled through until i couldn't anymore and i had to quit and was proven that i couldn't do it, it was another thing that my back will get in the way with.
After my three years i moved back home and back to my old doctors surgery still without a name or a helpful idea of what was happening. So i mad an appointment. At the appointment the doctor booked bloods and another appointment i got the bloods back and nothing but my normal bloods, borderline normal. The other day i had my second follow up appointment this time to doctor called in another doctor for his opinion we went through everything all my medical history (the appointment lasted an hour) he said that with everything it does sound like fibromyalgia with all of my other symptoms, so that is now the route that we are going to look down. I now have to re-book CBT to see if more can help.
And that is everything so far - i think...
Friday, 20 October 2017
Explanation...
Firstly i want to give a reason for why i have decided to finally write my story down and have a record of everything. I have tried to write things down before but i just end up getting paranoid that someone close to me is going to see it, not that its a bad thing but sometimes i just feel like i'm misunderstood and i don't want them to see me as i truly am... Broken. The main reason for this is so as i can get my head straight and maybe just get a load off, have some space to breath and have how i truly feel somewhere other than kept to myself.
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