Still no one understands

Hi, Ann....I completely understand...Fibro is horrible, and on top of that...I have scolosis, spinal stenosis, and five degenerative discs...They are not things that people can really see or feel, but I feel them every day....I hope you get through your three weekends just fine..I usually have a panic attack when I get too overwhelmed...Just wish people understood what we go through...HUGS.

Good morning hunni

Apologies in advance for the short message, but my brain (and body) don't work very well on a morning (or any other time of the day these days! )

But I just wanted to let you know that you are not alone, I (and probably everyone on here) completely understand and feel for you.

*sending huge gentle hugs* xXx

hiya Ann 

i was the same as you last year i went to my husbands sisters wedding and also stayed longer and we did things like you i used to be a dance teacher and a photographer and was mum to 9 kids so i was always on the go, but i will say im lucky asi have a very supportive husband and family as when i was at the wedding they could see is was struggling but even the bride said she new it was time i rested and my husband was amasing, i live in scotland and i was going by car to devon to see my son and i was tottaly dreading the long journey and the staying and having so much going on, but my son and my husband and my sons family were totally understanding if you go on the fibro site they can send you out information that helps the family understand more, yes its not cancer but its still a chronic illness that recks our lives and takes away if you like our freedom our bubblylness and makes us exhusted all the time and cry through so much pain my fibro has stopped me doing so much and although i cant teach or hold a camera any more ican help other sufferes to understand and the partners understand that this diease can reck your life, by the way i had to cut my devon trip which was suppose to be for two weeks to just 5 days as i couldnt cope, i hope this helps but we are here for you any time sendin

g love and hugs always cherl xxx

Hi Anne,

I understand exactly how you feel, i am the same, my family all though they are very good i dont think they fully understand what its like, and as its an illniss that isnt visable people find it odd that you have to keep stopping and resting even when your trying to iron something,

sending you best wishes and hugs x

Hi Ann,

I am a 33 year old single mother who was diagnosed with FMS 6yrs ago. I had to go thru 2 yrs of physiotherapy and feeling like a complete hypochondriac before I was diagnosed. I continued to work full time and raised my daughter, now 14, up until a silly fall in sept last year which ended life as I knew it!!

I have been off work now for 6 no this, refused any help on the basis my statuatory sick pay takes me £2 over the earnings threshold, leaving me to pay my mortgage and bills and raise a daughter on £160 a week. Went for a PIP assessment and was denied because they refuse to accept I am not working full time, they refer to the fact I work as a reason I was not granted even the basic amount. They also tell me they don't accept pain as a factor!!! So basically they know im in agony but it doesn't count. Got told at the meeting that 'half the doctors don't think it exists' when discussing my condition, felt about an inch tall Now I'm stressing about finances and feeling guilty a out being off work which is making my condition even worse...lovely!!

My daughter is now copying my example, lying in bed all day and staying up all night. This makes me feel so guilty, but I don't have the energy to argue or drag her out of the house on a day out. My parents are never done telling me how I shouldn't let her be so lazy, they just can't understand that I am physically and mentally not able to argue with her right now...guilt trip no.2.

My partner has been great, he has changed shifts at work so he can be home more often, but this just makes me feel worse as he now works 12hr shifts and comes home exhausted, often to a house that hasn't been cleaned as I was unable to get out of bed! Guilt trip no.3!! He has been understanding but is now scared to touch me in case he causes me pain, my family and friends are all busy with their own lives so I dont see them often and my partners lack of intimacy has left me feeling so socially isolated. I can't do the things they do anymore and they can't see any reason who not!! I have been to the doctor demanding tests for different conditions in the vain hope I have some other medical condition, something tangible that ppl will be able to see and understand.

Ive recently been referred to a pain clinic at my local hospital which has been great, the first thing they tell u is that the know u are in pain, the believe u! I started crying when I heard that, it was like a weight had been lifted as here were medical professionals with 20+ yrs of experience telling me that I wasn't mad and the pain isn't in my head. First time in 6yrs I've heard that, changed doctors 3 times in this period as I felt fobbed off and disbelieved, was on the verge of giving up and accepting I was crazy!

My advice is to find a local support group and get information on what is available in your local area. When ur family realise that there are lots of ppl suffering just like u it might help them understand the impact ur condition has a bit better??

Please stay strong and refuse to be pressurised or guilted into overdoing it and making urself worse. Its easy to fall into a vicious cycle of stressing because u are in pain and causing that pain to worsen because u are stressed!!

Is there a compromise that can be reached? Instead of u cooking for family, have a takeaway or agree with ur husband to attend parties but leave early??

I hope u get the support u need, remember to ask the doctor if thr is a pain clinic he can refer u to and please take care of ur mental health, its very easy for anxiety and depression to creep in, especially when u feel alone! It's a shame ur family can't understand, I hope that changes for u soon x

Hi Ann, I really sympathise.  Please dont only think of it as letting others down, it's disappointing for you too - more so.  You remember how you used to be and want to keep that enjoyment in your life and cant.  I'm sure you'd love to be able to do those weekend visits and have fun, why wouldn't you.  Now that you cant, its deeply hurtful and upsetting to you.   Others must be made to understand that it's not all about them and you letting them down.....thats not the point.  You're the one in pain, you're the one whose body won't let them live their life the way they want to.  The fact your husband lost his first wife to cancer should make him remember vividly how difficult it was when she was sick for her to be able to do the things she could previously do.  He needs to understand  you too are 'sick', and whilst it may not be as life threatening as cancer, it most certainly IS as life restricting.  There are some great websites specifically designed to provide clear and easily understood advice to family/friends about what fibro is and how it affects the sufferer.  My suggestion would be to print some stuff off and hand it to them all to read.  

I know from personal experience that I can often hear myself apologising, whining even.  I feel bad about saying no to things and it comes across in my voice and my demeanour.  Which makes others sometimes perceive it as excuses.  I am now trying to be more assertive and positive in my responses.  I've been very specific to friends and family that they should not automatically exclude me from invites but that if I am unable to accept, they MUST understand that I too am upset and disappointed and that I only decline because I am physically incapable of the exertion and effort and really, lets be honest, instead of being peed off at me, they should be comforting me and feeling sympathy for my pain.  Lack of understanding of our issues is one thing, selfishness and petulence that you've spoiled their fun is totally unacceptable.

Hi Ann,

I am so sorry to hear that you're having a difficult time. It's bad enough being stopped in your tracks and trying to remember the last time you had energy to do anything whilst still carrying on as best you can.

Please don't feel guilty for what you can't do anymore, whilst fibro isn't fatal it is debilitating, and if you carry on trying to please everyone around you all of the time (so's not to upset them) you are going to burn yourself out completely

Maybe show your family this thread or fibro info site so they can see just how this affects people - maybe then they will have some more understanding

At least with this forum, you will always find comfort and lots of love - I know it's not the same as the understanding of your family, but with your fibro family there will always be someone here to connect with when you need it

Lots of love and gentle hugs xx

Hi Ann I am so sorry for what you are going through, and fully understand how its making you feel.Ive been their and got the tee shirt on this one. I wish our condition was visible for all to see, unfortunatly for us it isnt, and this where the problem lies. The only people that understand fibro is the people that have it. No one understands what it is like to have it our family friends some drs health professsionals no one. I personally think that if you do what your husband want you to do 3 weeks on a row. you could have aflare up miss your sons wedding.Fibro has no limits if it thinks weve done too much we end up paying the price. I personally think from my own experiences it will be too much for you. your husband family should be supporting you helping you and rying to understand.But I know from how my family friends have been they just dont understand and dont want to understand. Could you print information off about fibro and give it to your family friends. with our condition we have to say no if people dont like it tough. their not the ones going through this hell. I would put your foot down with every one dont feel uility you didnt ask for this condition you dont want this condition. none of it is your fault or making. Your family need to look up fibro suurely from how you are they can see how your sufferring. I know its hard on our loved 1s but having fibro has changed us all from the person we use to be. we can no longer do what we use to do. family have got understand this. dont feel bad and guilty ann its not your fault. take care gentle hugs

Hi Ann

you have my sympathies. It is so hard for our loved ones to understand why we can't do what we used to do with no trouble isn't it? My husband lives in chronic pain as he has rheumatoid arthritis and OA and OP so that is not an issue, except he always feels his pain is greater, and it may well be to be fair, I say it's not a competition! My problem is, I am the one that did things around the house as well as working full time, now I am off work for the last 6 months, and about to go on to half pay, and I still try and do the things I used to and get frustrated and feel guilty that I can't. My children recognise there is a problem, but they don't fully understand, they are used to their dad in pain but not their Mum! It is a bit of denial for both of us really! I have printed different things about Fibro for my husband to read, and it has helped.

being on this forum really does help me, I hope it will help you too, stay strong, one day at a time, onwards and upwards! 

O Dear Ann

yoi really do need to find a way of making your family understand at least a bit about what FM does to you.  You have done right to refuse Togo away on the run up to the wedding.  It's such an important event which you will want to to enjoy and the best chance you have is to rest a lot on the run up.  Whenever I know I'm planning to do anything I take it extremely easy beforehand to the point of doing practically nothing.  Maybe you can show your husband this website and encourage him to read what others have to say.  My partner is mostly great but it took him a while to understand and he still sometimes doesn't fully get it.  I showed him as letter called ( a letter to normals) try googling this it's easy to find and he changed after reading this and other stuff.  Good luck and I hope you manage to have enough energy to enjoy the wedding.  A little bit of advise during the day of the wedding try to rest during the day if you get a chance.  Kathleen x

we have been invited to a BQ this weekend by my husbands foreman at work, my husband said about us going I said you can go Im not stopping you from going but Im not going. with the pain Im in and feeling shattered I would not enjoy myself, Ive found since having fibro I know longer feel comfortable and at ease in social situations. Its hard saying no to loved ones and friends. but its something we have all had to do, we are just not able to do any more what we once could. I never ever stop my husband doing anything socially, but I can no longer do it. Our love ones find it hard understanding just what it is like for us. If only our condition could be visable then it would be plain for all to see. thinking of youx I personally would get info togeather for your loved ones and friends gentle hugs 

At the end of the day your health comes first and the most important weekend you have now is your sons wedding if mums not there thats sad your husband needs to be put straight fibro is not something you want its something you suffer and i mean suffer i have it with a few other things im sorry to say if he disagrees there is something wrong there if he cant support and thinkof you hope it works out best for bothx

Hi Ann

Your not alone there when it comes to your nearest and dearest.  We have all been there. Although I have been suffering with pains for over 20yrs and only diagnosed with Fibro 2014, I didn't get much support from my nearest and dearest.  Once I was diagnosed I told them that I have Fibro and if you need to understand me then please google the info and then you can understand what I am going through.  It opened their eyes and now they all have an understanding, but I do tell them all that I can't plan my life weeks ahead but only can deal with ONE day at a time.

So far I have managed to say NO and I make sure I take time out for myself. Some days are difficult but now many days its becoming easier.

Gentle Hugs  x

Hi Ann,

I have learnt not to make plans. All my friends and family think I am flighty and probably a bit cooky, but I couldn't stand disappointing them anymore with the last minute cancelations. So now I "pencil it in" and let them know last minute if at all. This way if I arrive it is an unexpected happy surprise. I throw just a little arogance in there for a laugh, you know the 'be happy i graced you with my presence' with a big smile and a laugh. Might be a little easier for me because I don't have kids as of yet (don't know how i'm going to manage that one when it comes) but I am embracing my inner artist. Unpredictable and spontaneous and most of them don't even realise that its because I'm in pain that I am not around. I'll see how long I can keep it up. Fake it till you make it baby.

You are all marvelous. Thank you so much for all your support. I wish i had friends like you that were so supportive. One lady wrote that she is a single mother with financial problems. Well Im 57 now, but I brought up my three children alone when they were all under 3, for 20 years. There was no child credit then. I had to work 7 days a week all those years to support them. What I went through Im sure started off all this fibro. The stress was unbelieveable. I am now happily married and have the best life a woman could ask for, but the past never leaves me, and all these health problems are a result of that. My husband is the best ever, but where illness is concerned, he closes his eyes. He is going alone to one friends for a weekend. Im relieved to be honest. REST, I am going to do what another here said and not make plans anymore, just go with the flow and if i feel like it, i will go if not i wont. What a change from the woman i once was. But we all get older and that is life. I have to do what i can. Thanks everyone.