Life
ankylosing spondylitis) is a bloody nightmare, I have fibromyalgia/ osteoporosis of my spine/ tinnitus/ alopecia and had all my teeth out as had issues from the biologics I was on and I struggle with dentures/ have burning mouth pain and burning lip pain and gut issues and gut issues,now I have my right wrist painful I don’t see a physio till middle of August earliest appointment, I am right handed so having to ask my husband all the time for help and understanding from anyone is another nightmare as no one understands it.it challenges me, it takes to me to pain that normal people can’t even imagine, it try’s to destroy you as as a human/ it changes your life completely, if you don’t have just one of these conditions you don’t understand the mental/ emotional and physical and the depression to just give up a lot of the time and how it erases your soul and your mental health and the physical health you had the independence you had, the social life you had the gym, your work it completely destroys you as a human being, and destroying your relationship your grandkids who hardly see there grandma, your daughter hardly sees you and your husband has his own health issues mental and physical.
It tears you apart you loose you who you were what you wanted to be and you can’t out for a few hours without pain, days away/ holidays the list goes on, just getting out of the front door is an accomplishment never mind driving as I can’t do that anymore, my height have lost so much so I can’t drive, the gym years and years ago I loved it but to go and experience so many things that I miss is very depressing.
This and more is AS.
I am 66 it happened at 62 just like that overnight like a switch been turned on my husband drives me everywhere I loved driving like I used to love gardening spending time with friends which I don’t have now as I can’t make birthdays/ anniversary’s/ or even away for a few hours my husband misses me I miss me and he says
His life is passing him by,I understand that but I have no life either I am stuck in the house, least he can drive, take photos which I could do but can’t now only with my phone,and he volunteers once a week at a nature place for a couple of hours one day a week,I am friendly I miss talking to people he is the opposite to me and finds it hard to use the phone, talk to people but likes going out with me when I can but also like his time,
Sorry my mood has been like this for awhile and my thoughts are just all over the place,why is life so painful what did I do to deserve this, was there something i did if I did I don’t no, no one deserves this not one single person.
My support is my husband we have each other as no friends nothing I hope it’s me that goes first as my husband has sisters brothers and four grown up children, I have my daughter she has two children and her husband and his family which is big.
She has no brothers or sisters.
I live in the uk if anything god forbid happened to my husband I couldn’t stay in our house it’s council and we have a lovely garden my husband did this and I would miss it as I would be sent to live in a care home.
What a way to go…..
I can tell from this and your other posts that you are really struggling. Please know that we care and are sending you hugs across the Atlantic. Here in the US, one form of support for many people is their faith community, such as their church or temple. Is that an option that is available in the UK? For some, it offers not only a listening ear, but also access to extra hands for help. Might that be an option for you? Thinking about you warmly, Kathy (Team member) Thank you for opening up and sharing so much of what you’ve been carrying. That's not always so easy to do. It makes sense that you’re feeling exhausted, overwhelmed, and grieving the life you had before AS changed so much for you. When so many parts of your life change at once, like being able to drive, garden, see friends, go out, or do the things that made you feel like yourself, it’s completely understandable to grieve that loss. Those changes can feel like losing pieces of who you were. But I’m really glad you have your husband by your side. It sounds like you both have been through a lot and are trying to support each other while managing your own health challenges. It’s also clear how much you miss being able to show up for the people you love in the way you used to. Please don’t apologize for sharing how you feel. Sometimes having a place where people truly understand the struggles, frustration, and sadness that come with chronic illness can make a difference. You’ve been through so many changes in a short amount of time, and it’s understandable that some days feel heavier than others. Despite everything you’ve been through and continue to face, I think it’s important to recognize the strength it takes to keep going. Is there something you’re proud of yourself for continuing to do, even with all the challenges you’ve faced? Nonetheless, thank you for sharing such a vulnerable and personal piece of your story with us. I hope you know that sharing your story matters, and there are people here who understand how much these challenges can impact every part of life. We’re here to listen, support you through the difficult days, and remind you that you don’t have to face these challenges alone. 🩵 Sending you encouragement and strenght, Latoya (Team Member)
