Needing to accept my diagnosis after ... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Needing to accept my diagnosis after a year. Any help would be great please xx

flowerface profile image
15 Replies

Hi .

I was diagnosed with FM over a year ago after years of finding other illnesses out.

Im 39 and have arthritis in my pelvis and spine and have had my right hip replaced in 2015. During all the scans over the years I was diagnosed with Chiari malformation type 1 which is a rare brain disease where the bottom part of my brain is sitting in the top of my spine disturbing nerves and brain fluid etc. The symptoms are very similar to FM. I've been having a really bad time lately and going through a divorce which ended due to my illness and my husband not wanting to deal with it. I have 2 kids ,one of 18 and one of 7 . I am really finding it hard to accept my illnesses as obviously as I'm sure everyone is the same I don't want to be I'll and was always the life and soul and feel now like half a person.

Has anyone else had struggles accepting and is there any tips anyone could help me with in starting to accept how i am . Thanks in advance. Hope everyone is aswell as expected.

( I've never posted before either so hello to everyone )


15 Replies
YASMINTINA profile image
YASMINTINAFMA UK Volunteer, hello there and welcome, yes it is truly hard to accept this condition, on top of that the person you love and married was not able to cope, I know it is hard for family and loved ones as I went through a patch last year I really was struggling and could see my grown up children really didn’t accept it , all the love we give and sometimes all I wanted was a cuddle and quality time spent when I was laid up. My Hubble is now accepting of this he feels for me, is sad to see the very out going girl he married , not being able to attend social things as much, take to my bed on not so good days.You said half a person , yes I get that, so true, my piece of advice is take each day as it arrives, some we look back on and think well that was not too bad, and days we just want our own space in our own house, and that’s okay too, something I’ve learnt to do. You have a mixed bag of conditions and I’m hoping when the divorce has gone through etc you will gradually move forward. I have chatted to some lovely members over the last 2/3 years here , we try to have a listening ear and some words of comfort. Glad you have posted and talked and hope to see you again. I’ve put a link above if you would like to lock your posts only our community can see. Xx

flowerface profile image
flowerface in reply to YASMINTINA

Thank you so much.

I don't mean any offence but I think also it helps that im not alone in feeling how I do. It's been a lot less stressful now me and my ex are apart and I'm sure things will get better. He has of late been taunting me calling a cripple and fat as I have put on some weight due to not being able to excersise due to the damage in my back. I know there only names and sticks and stones etc, but when you're feeling so awful anyway having that said is crushing.

Thanks so much for your lovely words. I'm glad you and your husband are finding ways to get on during this time.

I will so use your link too.

Thanks again . I'm glad I spoke out too xxx

YASMINTINA profile image
YASMINTINAFMA UK Volunteer in reply to flowerface

Gosh no offense you need to talk sometimes, what a horrid man saying that. What would have happened if it had been the other way around. I too have filled out I’m guessing at 57 and my meds that’s why, I used to swim but I have stopped for nearly a year now. I have cfs/ treated sleep apnea as well. Hope you get some lovely supportive replies today xx

Hi flowerface....I think someone said once (maybe here) that it's like grieving, grieving your old self and that resonated with me. I was diagnosed last September after 2 plus years of being unwell. I thought my diagnosis would help me accept, but it hasn't really...there's still an element of denial and a hope that one day this will just go and I'll be back to 'normal.' What I have learnt is to treasure my good days, appreciate what I do have but also allow myself to feel sad, frustrated etc. when these feelings arise. It's not being negative, it's being real.

I'm sorry to hear about all your health stuff and your divorce. That man is saying some horrible stuff to you which can't help at all.

I don't know if counselling would maybe help.

Take care xx

flowerface profile image
flowerface in reply to

Thank you so much for your reply kookeeM.

The more replies in reading the more I'm accepting it already . I actually don't feel on my own and also knowing that I'm not going mad is really helping.

Thank you so much for your advice I will definitely take each day as it comes and not try and beat myself up for feeling or being this way

Take care 😘

Elf6 profile image

Hello and welcome! I have only recently began to post on here but I have to say I wish I had done so years ago! I was diagnosed at 21 (I think, damn brain fog) I was young anyway! I didn’t really take my diagnosis seriously but fast forward 11 years and I now can not deny it! I think acceptance plays a huge part in healing. I know it’s easier said then done but actually saying to yourself, my goodness, I am poorly, I still manage X Y And Z! You should praise yourself on your good days, be positive when you feel well enough, and be kind to yourself when you don’t. I have a husband and two beautiful children. I have extended family who care very much for me, but not one of them will ever understand. And do you know what, that’s okay! I don’t want them to, because that would mean they would be feeling and experiencing everything that I do. I wouldnt want that for anyone! So chin up, your doing amazing!!! You have two wonderful children, and that is the positive to take out of your marriage! As for your husband......if he is so perfect that he can comment on your weight then he is obviously destined for bigger and better things isn’t he (I say that with a whole heap of sarcasm) you are much better away from his negativity, you do not need that in your life! I too have put on weight. That I really do struggle to be positive about! But, I am older then I once was, have grown two little humans inside me, and live with multiple conditions on a daily basis, so actually, I look good all things considered! Don’t get me wrong, I’m not always a positive person, I too have days where I cry and feel utterly helpless, but I embrace them, accept them and them feeling ssoon melt away and I’m back to positive. It’s like a cycle. Don’t fight your feelings, they will change daily, and that’s okay! Your doing great! Take care of yourself xx

flowerface profile image
flowerface in reply to Elf6

Wow thank you Elf6

Your advice and your positive words really help.

I do have to take each day as it comes and be less hard on myself . It is the thinking " I am ill " that gets me as I never thought I'd be a person to be this way as I was always the mad confident one. Not any more . But know I'm not going mad or on my own is a massive help.

Thank you so much 😘

Luvadog profile image

I certainly do. I went through this when I was first diagnosed. I had also been in accident and i couldnt accept i wouldnt be able to work, my other half dumped me, for many years i had been the go to person for a lot of friends who weren't there for me. That was nearly 15 years ago. The way through it is to take things slowly. This is where you are and where to build from. For some people climbing a mountain is a big achievement, for others its getting out of bed and combing your hair. Begin with what you can do then build slowly. You are not just what you do physically. You are a friend, a parent, perhaps a sister and you are a worthwhile person. Also, there's some lovely people on this forum who have felt as you do. You are not alone.

flowerface profile image
flowerface in reply to Luvadog

Thanks so much LUVadog.

You're so right , that we are more than just " ill people " . I am a very good mother if i say so myself 😂. I am a sister and everyone's friend.

Thank you for you're lovely words .

Take care 😘

Sarahvit profile image

Hello flowerface, yes I’m familiar with Chiari 1 malformation. I wasn’t formally diagnosed with it but in a twin study on fibromyalgia and CFS done out of Seattle WA back in 98 they flew us out to Seattle for a week long of testing, scans, exames, sleep studies etc. well when the doctor was doing the exam said I had all the physical symptoms of Chiari 1 malformation. I too have a long list of other illnesses and went through a nasty divorce where he couldn’t handle my illness. So you are not alone on this. Sounds like the divorce is relatively recent. That was the hardest thing I ever went through. Losing the love of the man who made wedding vowels to love you in sickness and in health and to death do you part (now that doesn’t mean you knock the off) it is hard to have your soulmate where you shared your dreams and life goals to only come smashing down on you. Yes it is a very hard and you shouldn't have to do this alone. Find an after divorce care support. I’m sorry but my brain shut down and hour ago and I am here for you. Right now sleep 😴 is calling my name. Goodnight 😊💕🦋🌻🌷💜🥶🥵

flowerface profile image
flowerface in reply to Sarahvit

Wow Sarahvit.

You're the only other person I've " met " with Chiari !!! Did you have the surgery ?.

Thanks so much for all your kind words . My divorce is a year old now.y ex is very immature and has quitened down last few weeks . Like you I just don't get whinge is anymore and yes the whe " till death do us part " clearly didn't mean a thing. I meant every word of my vows. The only good thing that has come out of it is that I now truley know what and who he is. I just wished he'd have shown his true colours earlier so I didn't waste 8 years. My pain believe it of not got slightly better after he left as he stressed me out anyway as I was trying not to show it because I didn't get want to annoy him . I'm glad he's gone.

Now its just me and my 2 beautiful children. Just how it should be.

I'm sorry for all your illnesses and sadness you have had. But hopefully like I should be doing , I hope you're dealing with it as best you can.

Thanks again 😘

Sarahvit profile image
Sarahvit in reply to flowerface

No surgery. It was a doctor at the twin study who said something about it so it isn’t in my medical records. None of my doctors followed up with it. Did you have the surgery?

Yes stress is going to make the pain worse and unfortunately men make things more stressful. It seems like the 2 I married have become so self centered it is sad.

Is that your only marriage? I’m glad you are less stressed and happier now. My ex gave me a lot of grief when our children were young but as our children grew up my ex got more friendly and he spent his final years living with us. His health had deteriorated and he left wife #3 because of the stress from her out of control children. He couldn’t live on his own and didn’t have anywhere to go so we opened our door for him. So never know what the future holds. 😊💕🦋

KnackeredKaty profile image

Hi, I had a hard time accepting my diagnosis. It took me about a year to accept it. I haven't had a life free from illness, but when I was told all my aches and pains are fibromyalgia and there is no cure, I denied it for months. I don't know why it was so difficult. So, you are not alone in finding it difficult to accept. After a year or so I decided that ignoring it wasn't helping me, so I worked on trying to find out as much as I could about the condition. I have tried to heal myself by being a bit kinder to myself too, resting when I need to, instead of cleaning, which used to really bug me ad I'm a bit OCD!! I spend quality time with my family. I have even changed my employer. I work for an agency now and I can choose when I work. I now go to bed when I'm tired. I meditate and listen to relaxing audio books. Life is so crazy busy these days I have found that I have to make an effort to take time to relax, but it does help. I did find that being honest with myself and honing into how I feel and deal with issues has nearly eliminated my anxiety which was a new diagnosis last year. Try listening to your body and mind and you might find some acceptance soon.

flowerface profile image
flowerface in reply to KnackeredKaty

Thanks so much for you're lovely helpful words.

You sound a lot like me. I have researched since I found out I had it , firstly to find out what on earth it was as I was just diagnosed with it and basically left , but I'm also kidding myself trying to find the magic something to make me better and it's not there .

I have meditated for about 5 years now so I can switch off most of the time and I really enjoy it.

I have only recently had to take a step back on the cleaning as I can no longer do it due to other illnesses as well. I'm very lucky I have great family and friends around me too to help me.

I'm glad you've taken the steps to pace yourself . Maybe I should take a leaf out of your book.

Thanks again

Take care 😘

KnackeredKaty profile image
KnackeredKaty in reply to flowerface

Pacing has really helped me. It does work. Look after yourself, good luck. 😁

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