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I've felt low this evening, no painkillers. Just an Epsom salt bath, & hope. I'm not sure if I'm allowed to post a quote. But I've been scouring through Pinterest for some inspiration and I came across this beautiful piece.

It hasn't taken my pain, or made me feel any better than I did a few seconds ago but it has had an impact on me. I guess you find out who your real friends are in time of need, as mine have disappeared, my family are in crisis with each other, & my boyfriend works long hours & I confide in him almost everyday. But after reading this quote it feels like someone out there had a piece of me.. written almost about my life as I know it. & it's helped. I'm not the only one suffering but it is a lonely place sometimes. I don't like asking for help and maybe that's the Leo in me, the stiff necked pride, but sometimes it's nice to talk & get things off your chest. I don't speak to anyone really, mostly my diary but the diary doesn't speak back, it's tough because no one in my entire family have what I have, & this beautiful place has gave me such comfort. A community of lovely people some suffering in the dark & some walking into the light. I'm in between but I'm thankful. I'm grateful for the replies & the helpful advice & support. I feel as if I'm a burden to my family, & im trying to help them when they need me which is almost everyday, but when I'm curled up in bed crying out no one has any time. I've always put others first but since the possible GPA vasculitis occurred I've had to change, try & at least put myself first sometimes. I do get called selfish, stupid & lazy for having a rest day, & as all sisters & brothers have some sort of rivalry my brothers & I have never bonded. & they make it extremely difficult to have any time at my parents. Today they said out loud " here comes the Leper" I laughed it off but it hurt, a lot. Sat and ate dinner & my younger brother of 23 said " id rather not sit by it, as I could catch that disgusting disease.." she's a freak" "look at those legs" " who'd want to sit by you with all those scars & spots" " join a circus sis you fit right in" I couldn't stomach my food, my dad is the inbetweener, he's a great support to me of late, but my brothers will always be the apples of his eye. I guess you can say they are ignorant, to vasculitis or any other illness & I think it's cruel to mock a pain you've never endured. I'm sorry it's been a bad day, & I'm in pain without any relief & sometimes it just hits home, sometimes it hurts, & it's ok because every body hurts & sometimes Quotes heal pieces of me that I didn't realise were broken beyond repair.

P.s I'm not depressed just needed to get this off my chest. X

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  • Laura if you want to call the help line anytime and talk to John or Lynn please do sometimes it's easier to talk one to one vasculitis.org.uk/helpline

  • Thanks Suzym2u, I will ring them thank you x

  • Hi laura I'm so sorry you're having such a bad time. I just wanted to let you know I went for counselling three times when I was first diagnosed to help me come to terms with things as I didn't want to keep talking to my friends & family. It may help or be worth a try? I asked to be referred by my GP and through my occupational health team at work. Or ringing the Vasculitis helpline could help too as Suzy suggests. I still have bad days but it's got better for me x

  • Thank you Katie18, I think the pain got to me last night 😩 counselling sounds good. I wouldn't know where to start and I'd prob ball my eyes out but it helps to talk doesn't it. I'm really glad things have got better for you, it's a lot to process I guess x

  • Hi Laura it is - and you really do need some support at times from family, friends & possibly externally too. Xx

  • Never, ever apologize for speaking up and speaking out. What you just said so eloquently, is a place that only you and those who know the degree of frustration and pain can express. Doesn't matter where or what kind, some have to experience it just because that is what the nature of their particular disease or illness brings. Yet, any healthy person who has a Gallbladder attack or just a surgery can really tell you how it was either the worse pain ever! or they just tolerated it! The only thought I have with people like that is this... Lucky, it didn't last long. Support is never a race to compare those things or shouldn't be. It's a place where we can identify with one another, share info. both personally and medically that you have to experience to appreciate. You can't blame family or friends for not (getting it) but the rudeness, denial, and down right insults are excused due to who they are. They don't know how you are fine one day (sometimes that's an hour) and sick or hurting the next. All they want is just (keep it away from them). Joke at your expense. If you wanted to be made fun of, questioned, interrogated, you would have a picnic in the park. Speak up. You have nothing to be embarressed or ashamed of dear. Their behavior, can't say that. We all need a soft place to land and sometimes that is one place and some days that is here. We may have questions, share pictures and stories because we are all on the same journey to learn what is wrong with us and what to do. Just different mile markers. It helps if those who have navigated this road to do what they can when asked. It's the journey, not the diagnosis that bonds us. We don't have all the answers but we might just know a guy that knows a guy that just might have that answer. What we do know, is more important...... We know the feeling, the pain, frustration, he relief that comes in finding another person, much less group of people that are dealing with these same crazy things. We can give the person who doesn't (get it) a pass. What we owe ourselves and each other is to draw a line at disrespect. Enough said. Hope you have a better day. You copy or write anytime you like. We even have phones and can speak back. And will.

  • Hi sherry

    Thanks ever so much for your sincerely genuine reply.

    The bit that touched me the most was " we all need a soft place to land" that bought a tear to my eye, because your very right.

    For some reason that quote will live with me forever. & I love that. I love those words!

    I guess it's hard for family & friends to understand why I am like I am. It's also difficult for me to adjust too. Yes I've been unwell on and off but this seems to be never ending. I have been researching the way I have been feeling...

    To be honest for me it felt/feels like I'm grieving for my formal self who I was before all this took over & I read so many things & I found this site with this written infinite loss- grieving for someone/oneself who is still alive & feels like that "old you" has died/ gone....

    After reading it I understand myself more. As I felt like this chronic illness has stripped me to the bones & I don't know who I am.

    My brothers & I have never connected. I've tried countless time to bond & have a relationship/friendship. But we're strangers. I don't know why but I feel like I'm adopted as we have nothing between us. The lads are 24 & 29 I'm the oldest at 30.. well I'm 31 next month.

    I've had a tough time I guess, the friends who've I've classed as besties have vanished.

    I can't do what I used to do so I'm not needed anymore.

    But that's ok, because even though this illness has literally taken over my body it will never take my soul. I'm still me, I'm just a different shade of the rainbow. I have many colours now. And I guess you find out who your true friends are.. in times of need.

    I don't blame anyone, or hate anyone. I don't judge or hold a grudge. I look at life differently now & I guess I'm slowly learning to expect that it's ok to be different, it's ok to cry, it's ok to feel sad & happy all at once, it's ok to be scared it's ok if I'm not ok..

    I'm only human..

    I guess I have become a stranger to myself, I wrote this post because I was so lost, I was afraid of the outcome & fearful of being weary.

    I lost my faith along this winding road, I stopped going to church, I couldn't enjoy the things I once loved & adored. It's like the life I had was gone & over night I was given a new one, one I didn't ask or pray for. I was grateful for the old one. I was angry and bitter because I didn't think I'd wake up one day and never get better. I became a shadow & was literally alone.

    I had to talk, I had to tell someone how I was feeling. I'm very honest, & the quote I put up with the post helped me. I know I'm not the only one suffering in the dark, there are many others, but I've come to the conclusion.. we will find each other in the dark, we're not alone we're all in this together.

    X

  • I totally forgot the most important part of what I wanted to tell you. Trust me, the details of this is way over my head. But, I do do know how to find my way enough to understand enough to get going in a correct direction. You said something about not understanding how you condition can effect so many areas of your body, much less at different times. So many conditions mimic one another simply because of the target area. In our terms. Someone who has a bug bite, a medication adverse reaction or some inflammatory process still all trigger the IMMUNE system. That reacts by sending rescue cells to a particular area, or in the bloodstream. So, we would get increased Immunology values that would be elevated. In an inflammatory issue such as a bug bite or arthritis flare , would also see an elevated ESR (sedrate). Other test would be positive such as an (ANA) depending on the severity that the body needed to react. When antibody test are positive like the ANA, it is in response to something introduced to us that isn't normal. Doesn't always mean serious. It's like our baby shots we all get to protect us from Polio, and other diseases from long ago and the yearly flu. Some times, we can have those in our system but not enough or too much of it. That is why you see some test have titer levels. We have enough to protect us or we don't.... or it's normal to be there or it shouldn't be there at all. Because this is common or "seen" in so many conditions...... it can be difficult to sort it all out. Rightfully so, the Drs. begin with the most simple and benign issues. It can take a long and in some cases a very long time to figure it out. Because of the treatments involved, as in our case with A. I. P. , is worse or carries alot of risk to treat, they have to be right before they commit. Probably why everyone with a joint pain can have arthritis but they draw the line beyond that. So, test and symptoms point us in a direction and sometimes we have to treat those with or without a diagnosis. Can't have 104 temp. and not take a Tylenol... not gonna work. I want you to get this part without playing Dr.Ure bodies have many different types of tissues and cells that are throughout on organs, muscles and sone bone. It depends on the tissues or cells being effected and where they are and what they line that is where our symptoms occur. Read that again... LOL So if you have headaches or your big toe hurts. It can be related and fatigue, including "hit the wall" as my daughter would say. I am walking but I have no energy to talk and walk. For the first time ever and not an ER type of patient for her,...... 6 weeks ago I had to take her in the middle of the night for that reason. She felt so bad, even though they offered to keep her, she went home after some fluids, nausea med. and a lot of test. The most important thing you should be doing if they didn't tell you is, Keep a diary. Everyday and everytime you have a symptom. We can read faster than you can explain and we are looking at it and helps catch anything or a pattern. Susan took forever to realize how important this is. But it helps tremendously. Will talk soon. Sherry

  • Hi Laura,

    I was just picking up to call you. I can't find your number now. Please resend it? Thank you so very much,

    Sherry

  • Velveteen Rabbit - "Real isn't how you are made,' said the Skin Horse. 'It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real.'

    'Does it hurt?' asked the Rabbit.

    'Sometimes,' said the Skin Horse, for he was always truthful. 'When you are Real you don't mind being hurt.' 'Does it happen all at once, like being wound up,' he asked, 'or bit by bit?' 'It doesn't happen all at once,' said the Skin Horse. 'You become. It takes a long time.

    That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby.

    But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand."

    # # #

    Laura - People can be brutal, even those who are supposed to love you and care what happens to you. I used to rage against them for being so cruel, but I am starting to realize that they are terrified of the possibility that what is happening to you might happen to them.

    Please know that the crazy path you are on, as unfair as it is, also makes you much stronger than them. They cringe away from the power and strength that is growing in you because you have been tested so much.

    If you can, when you are feeling sick and weak and vulnerable, reach down way inside and grasp the shining sword, the diamond armor, the titanium shield you have forged from everything existence has thrown at you, and take it up and wear it proudly for all the universe to see.

  • Lauren you are amazing !

    That moved me to tears in a good way. Wow...

    I didn't take a breath whilst reading it & at the end I cried for all the right reasons.

    That to me is the best way of describing me.. "being real" omg it's like wow! Spot on & so true.

    Your so right that despite it all it does make you stronger,

    "Grasp that shining sword 😒 the diamond armour the titanium shield " take it up and wear it proudly for all the universe to see"

    That's overwhelmed me.. truly amazing thank you so much Lauren.

    It's very uncanny that you messaged because I was starting to feel low but this has magically made me feel powerful I can't thank you enough xx

    Saving grace ⭐️

  • I read the Velveteen Rabbit every time I start to feel overwhelmed by my disease - and it brings tears to my eyes every single time. I'm glad it helped.

    And the other... I have felt so powerless so often with all this, and so not understood, that I had to come up with something to visualize when I needed to stand up and fight for myself even though I felt so sick and nobody believed me and everybody wanted me to shut up and just act normal already.

    It is true that what doesn't kill you makes you stronger. You just have to give yourself permission to let that strength shine through and not be startled by it. It is a gift special to those who have fought impossible fights against giants and still continue on to fight again tomorrow.

    Embrace your specialness whenever you can, and school those who try to tear your strength from you with a withering glance while you hold your head up high. Damn bullies.

  • Lauren that means so Much !

    It's really nice to connect with someone who know how it really feels mentally & emotionally as well physically. The velveteen rabbit story is now my once upon time.

    I can relate to how that feels about others wanting you to just "be normal"

    It's a slow process but I'm learning to live & love the skin I'm in.

    One more sleep & I'll be travelling on a train " phobic" but at the end of the tunnel I'll finally step foot in a wonderful hospital where there is help for me.

    I think I'm full of mixed emotions today, quite tearful but I know tomorrow is gunna be a good day.. it's the start line & I'm more ready than I ever have been. To get to the finish line with my head held high. Diamond sword n all.

    X

  • I am so happy at last you are getting the help you so need. But don't be afraid to ask questions and say no if something doesn't feel right, or you feel they aren't telling you things. I have found that even the best hospital have aspects that are little disfunctional and you have to navigate around or through them sometimes to get to the treasure.

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