I’m linking up to A Chronic Voice Link up Party for people with Chronic Illnesses, and following the prompts for February.
I already have a post in my drafts about this which I’ll probably never publish. Adjusting can be so difficult sometimes and, hands up, I’ve been having problems.
It’s the simple things, filling the dishwasher, carrying the washing, cooking dinner, cleaning, all the usual things that most mothers or housewives do naturally.
I want to do them. I want to be able to de-clutter, tidy the bedrooms, change the bedclothes, sort the old clothes.
I can’t. It’s just not physically possible for me. So, I’ve had to adjust. It’s no good asking others for help, they don’t do it quickly enough, or at all. I can say, ‘please bring the washing down from the bathroom’ every day for a week, but it’s still there. So I bring it down myself. I drag the basket down the stairs, step-by-step. I’m scared of it tipping up and knocking me down the stairs, so I go as slowly as possible and hope for the best.
Then I get berated for doing it.
I’m adjusting, slowly. I don’t like it, but if I do a little at a time I can get through. I just have to accept that there are some things that I cannot do.
I hope a lot. I hope that I will be offered a new treatment. I hope that my current treatments will actually work. I hope for a day free of pain. I hope for a cure. I hope that one day I’ll wake up and this will all be gone.
But these are not what I’m really hoping for. I am realistic, I know my fate.
My biggest hope is that my children remember me as a fun, kind, friendly, happy Mum and not as a disabled Mum.
There are times when I am really ill that I’m not sure I’m going to survive. Because of this I’m grateful for every day that I do.
I’m surviving this condition, I’m fighting it all the way. I think of the future and half of me does not want to carry one for another 10 or 20 years in pain. The other half wants to survive, because ill or not, life has so much to offer.
Another blogger talked about befriending her condition. I think that’s kind of what I’ve been trying to do. That post that will never get published, it was all about acceptance.
I feel I need to accept my condition and let it become part of me instead of letting take over me. You can’t get rid of it, but you can accept it. That’s kind of befriending it isn’t it?
When you have lots of time to think, all sorts of things awaken inside you. What have I done with my life? What else can I do? How will my illness prevent me from doing all the things I want to do? Is my life over already?
These are the dark thoughts awakening and it’s hard to shake them off. I get them frequently but I try not to let them take over.
To prevent the black dog from awakening I practice mindfullness, meditation and just taking plenty of time out to do what I want to do. Then I’m able to regain my perspective. My life isn’t over, it is worth living. There is always hope and I know I’m so lucky to have such a wonderful family around me.
For any new visitors to my blog, my illness is Stiff Person Syndrome which is a rare neurological disorder. I also have PERM
Read this yesterday, Anne, and could not respond immediately, for fear of writing something trite. It sounds like such a tough position to be in, but I love the fighting spirit and decency, kindness, humour and interest in others and all the other positive qualities that shine through in this and all your posts. #ABloggingGoodTime
Thank you Enda. I do try to stay positive, even if I have to work really hard at it.
Thanks for joining us this month, Anne. What a vulnerable and open piece. It really isn’t easy being a mother with chronic illness, especially when your children mean the world to you, yet you can’t give them every good thing you wish you could. I’m also glad that you are holding on to hope, and glad that you have such supportive family and people around you 🙂 Sending good thoughts your way, and hoping that your good days increase, so that you can spend the extra pockets of energy on your lovely family!
Thank you Sheryl, I hope I will be able to join in more in the future, it’s good to connect with other who understand how it all feels x
I second what Enda wrote in his comment, it is hard to say the right words, but wow you are so brave and always sound so vibrant, I can only imagine how hard it would be to befriend it, I try to do that with Anxiety and Depression and somedays it kind of works other days I just hate it with a passion. Thank you so much for opening up and sharing with everyone including our link up #ABloggingGoodTime
I honestly believe that your mental health is so much harder to deal with than the physical. Depression and anxiety sucks x
Its nice that your pour your heart out here Anne. Its always better to share with others, you feel a little unburderned. Its great that you practice mindfulness. I also do that, I follow teachings of apiritual master Eckhart Tolle, though hard for me but feel good after a 30 minutes meditation. If you need help with diagnosis and and a second opinion on your treatment, you can fill up this online questionaire, selecting all the symptoms that you have along with your contact information: https://franklincardiovascular.com/autonomic-questionnaires/
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