How to explain to family and friends please?

I have been poorly with fibro like symptoms for some years, which I believe were exascerbated by an accident, the consequence of whch has left me permanently disabled due to back injuries.

I also have restless leg syndrome, ptsd, severe ectopic heartbeats, and all sorts of other things which I don't want to go on about.

The problem I have is making my problems understood by my close family and to a lesser degree friends.

I just cannot find the words to do this. I have always been the strong one in the family, who all turn to, and now just do not feel well enough to cope with their many demands.

I am very bad at talking about my illness, I am almost too embarrassed by it, which I know is stupid, but I just cannot seem to get past this, and ask for the help and understanding I so desperately need.

They make me feel a waste of space, except my dear husband, who does have some understanding, thank goodness.

I truly can feel myself getting more and more depressed, and have at times felt suicidal. I am just so useless, I cannot remember things, and they will not forgive me this.

It does not help that I have not been diagnosed with fibro, as my doctor thinks something else is going on as well, and will not diagnose it until all other avenues have been exhausted. He is very good, but it leaves me as' mum with a bad back,' which I have always had, to a degree, although not as bad, and makes no impression of what I am really going through.

If anybody has any advice, I would be so grateful to hear from you, I am so low, I cry a lot at night when nobody can see me, as I do not want to distress them all.

Thank you, Cazx

22 Replies

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  • The best way to do this that i found for anyone to understand what Fibro is like is to ask them to read THE SPOON THEORY ! google it.It's for a diff illness but is also Fibro to the T!! this should help them understand exactly what it's like!

    Good Luck.

    There is also a Monster list of Fibromyalgia..it does not explain what it's like but it tells you every possible symptom of Fibro you could have i have 53/62 ? cant remember out of the list!

    Tracy x

  • That is interesting, I have never heard of the monster list, I will look it up.

    Thankyou, Cazx

  • chronicfatigue.about.com/od...

    Here is the link to the list of symptoms

    VG x

  • Thanks VG,

    I have had a look and am a bit shocked at just how many I have, this is really useful, I will print this out!

    Best wishes to you,

    Cazx

  • Hi I got my husband to read the Spoon Theory ( butyoudontlooksick.com ) and he has been more understanding since. Also there are many good videos on YouTube which have been made by fibromyalgia sufferers. Ask your family and friends to watch them. I like you get embarrassed talking about it because on the outside we "look normal" so people find it hard to understand "invisible illnesses" . Take care xx

  • Thank you, I will look into the spoon theory, at least I am not alone, I find that with all the vilifying of disabled people being called scroungers these days, I do find it hard to explain, I should maybe take a copy about with me!

    Cazx

  • Hi Cazbaz,

    My own approach to this problem is rather more robust - I just tell people I'm ill, and I am not afraid to demand the help that I need. I try to be polite, but it all depends on the response I get!

    Basically, your illness is between you and your doctors, and your nearest and dearest - it's no one else's business in any way, so why do you need to explain or make excuses?

    If they don't believe you, that's their problem not yours, and if you lose friends - well who needs that sort of friend anyway?

    I know this sounds harsh, but after many years experience, and many years of apologising for myself and feeling worthless, I suddenly decided to get angry.

    I'm angry with fibro, but I have to accept it, I'm angry with people who make no effort to be helpful, and I don't have to put up with them.

    Psychologically, this is an approach that works - why should you fell sh*t about something that isn't your fault?

    Coping practically is another matter. I find that if I ask for assistance simply and directly, I usually get it - if I launch into an explanation of my illness and the pain I suffer, then people's eyes glaze over and they become too busy to help!

    Fibro, or any other chronically painful illness is boring - it bores me to death, and it surely won't interest anyone else. But I'm not boring, and neither are you, so focus on yourself and your needs, not the limitations imposed on you by illness. Don't say "I can't do this" - say "I can do this if you would kindly help me".

    I find this works pretty well, but it has taken a bit of practice! Try it - you have nothing to lose!

    Moffy x

  • Superb advice and well put, Having read your reply it has given me confidence to do exactly what you've suggested. I hope it will help me to deal with my dad in particular who I think is embarrassed about my health problems because you can't actually see that there's anything wrong with me.(Apart from the fact that I'm 54 but feel like 94)

    Thank you

    fyrefly :)

  • You are right, I know, I think I am depressed, I am not usually this ineffectual, perhaps I should have a chat to my GP, I worked so hard at coming off antidepressants, but I do sometimes suffer from this even without pain.

    Cazx

  • It's trial and error with anti depressants I have had fibro for 23 years and I am not in the least depressed I have had years to get used to it ... But I do take anti depressants to help me sleep and wow they work.. It's only been the last 18 months we found the right one that suits me and its very rarely I don't sleep and everything looks better after a nights sleep.. Maybe I.m not depressed because of the anti depressants.. Either way its win win .. But if you feel a anti depressant you try isn't doing you any good go back to your GP and try another one .. I finally ended up with dosulepin... Very old very cheap and for me very effective

    VG x

  • I rarely sleep more than 2 hours, at a time, usually about 4 to 6 hours a night, I have not had a nights sleep in many years.

    Nothing seems to help, I get rls and plmd, as well as a lot of pain, so I usually end up giving up and doing something, no use laying there!

    I will go talk to my doctor, and see if he has any new ideas, he is very understanding, I am lucky there.

    Best wishes,

    Cazx

  • Hi cazbaz, sometimes coming off antidepressants is not the right answer. It's like Ladymoth said you have to think about things in a different way. Dealing with chronic conditions is like a viscious cycle, you need to break one of the links to break the cycle. Many people with long term chronic conditions such as FM live alongside depression also, it is not a negative reflection on you. You are dealing with so many symptoms already, depression is one of those symptoms due to all the other symptoms and lack of serotonin in your brain - it is simply chemical. Anti-depressants help to level that chemical imbalance which helps you to cope better with the other symptoms.

    If you noticed I talk about symptoms of conditions and living alongside - this is because I changed the way I spoke about my conditions some time ago. I live alongside a rare bone disease, fibromyalgia, cervical and lumber spondlylosis, prolapsed disc and arthritis in my knees. I live alongside these but they do not define who I am as a person!!

    Instead of focusing on the negatives I focus on the positives - I have met some amazing people as a result of living alongside my conditions. When I feel like I'm having a 'bad' day I think of people less fortunate that me - don't get me wrong it doesn't take away the pain or whatever I'm experiencing at that time - but it helps me to not wallow in self pity.

    Like everyone else with FM there are days when I get down, wish the pain would go away, wish I could get a good night sleep - on days like this I treat myself.......(distraction)

    go for a 15 min lie down if it spills over to 30 mins or I happen to fall asleep then I dont feel guilty - I set my alarm for 35 mins so that it doesnt effect my sleep that night.

    snuggle up with a hot water bottle or heat pad, hot cuppa and a good book

    run a nice bath with bubbles and stay there until I look like a prune.

    go a short walk with my dog

    go to bed really early ( I sometimes watch catchup on my iPad - but never depressing TV)

    All of these things are ordinary things but if you give yourself permission to enjoy them, to take time for yourself it helps you to cope/deal with things better.

    Hopefully you have found some of this useful, always remember what works for one person does not necessarily work for everyone and I send this to you in the hope that maybe some part of it may help you.

    Take good care of yourself. It's only if you look after you that you are able to look after others and remember it's ok to say NO, without offering justification for saying NO.

    No, cant make that.

    No, “I can’t commit to this as I have other priorities at the moment.”

    “Now’s not a good time as I’m in the middle of something. How about we reconnect at X time?”

    “Let me think about it first and I’ll get back to you.” (this give you a bit of time to think about it)

    "Let me make sure I have no other commitments and I'll get back to you (again this gives you time!

    Take Care ML x

  • Thank you, ML,

    I apreciate the advice and ideas, I do actually do all these things, and do not in any way feel bad about it.

    I just cannot get through to some of my family that things are different, and I am no longer 'supermum'

    The reason I came off the antedeppressants was because of really severe restless leg syndrome, they made it even worse, but there are some that work I gather.

    I do worry, as I had a very bad reaction to one once, and went from moderately clinically depressed, to suicidal, and had to be under the care of the mental health team until they got the right balance of chemicals in my brain.

    I have no embarrassment about depression, it is an illness like any other, just a bit more complicated to treat alongside my other illnesses.

    What has made me realise that my family do not truly understand, and has knocked the 'stuffing' out of me, is my daughter is getting married on a greek island next year, and after telling me that she has to be there for a week before for legal reasons, she proceeded to repeatedly tell me I only needed to be there for a week.

    When she asked me how long I wanted to go for, and I said a week was enough for me, especially as my husband (not her father) is not going,, she went mad, as apparently I should have offered to be there the whole time to look after her young children and organise things like the flowers decs and cake, as well as do her hair, and take care of the other guests, this from someone who has watched me deteriorate from the manager of a large health shop, with many reponsibilities, to the way I have to live now.

    I just wanted some advice on how to explain to her and others close to me, what is going on and why I have to do things differently now.

    Thanks for your advice and kind words,

    Cazx

  • Caz I completely sympathise with your experience with your daughter. I have an 19 year old boy and 16 year old girl. I think as Ladymoth says you need to be 100% honest with them and say it like it is!

    One day my son said to me " god mum, your always ill", this was because I said NO to giving him a lift somewhere as I needed a lie down!

    He picked the wrong day to say this to me! My toleration levels were at rock bottom, so I gave it to him straight. The short version is I reminded him how I alone brought him and his sister up for 9 years with no help, that he and his sister want and need for nothing - that there is no fairy that lives in our house, that it is ME who does the cooking, washing, ironing, housework etc (you get the picture) and that if he truly believe his statement "god mum, your always ill" then he should be ashamed of himself for thinking of himself all the time, for not offering any help or so much as a cup of tea. I state that I was going to my bed, as unlike him I was physically unable to stand any longer and that he should take the time while walking to where he had to go to think about what I said!

    I admit wholeheartedly that I made a rod for my own back. I always felt guilty that my children were growing up without their father - I never wanted my kids to come from a one parent family, as I did as my mum passed away when I was young. But circumstances were as they were and I couldn't change that! So I tried to be Supermum - did everything for them and then would collapse when they went to bed.

    What our children have to realise is that they are not children anymore, they are young adults and therefore they need to do more for themselves - we have the right to a life too. You are entitled to your freedom, peace and quiet and space.

    Your daughter needs to realise that you love her and her children, but that she cant rely only on you for support. Her wedding is a special day and of course she would like everything to be perfect, but its not down to you to run yourself ragged making sure everything is in place, flowers, children etc. Does she have a Maid of Honour? Friends? attending the wedding. If she has, she could ask them to help out on her big day.

    It's difficult, I know - my sister-in-law also has FM and her family refuse to acknowledge that she has anything wrong with her. She has now learnt to deal with them in her own way. She has really embraced saying NO. She told me recently her mum started to ask her if she was ok, and she said "no mum, i've been telling you for god knows how long about my FM and what I go through, but you just refused to see it. I need you to acknowledge that I actually have a long term chronic condition and that it's not going to go away- that's all I want from you!"

    My S-I-L now accepts that she cant change the way people react to her but she can change the way she interacts with them. She has started to feel so much better now that she has let go of alot of the anger and hurt she was holding on to!

    Anyway, you must be bored with another essay - hope your daughter starts to understand you, and takes the time to listen!

    Good luck, gentle hugs

    ML x

  • The problem is Moffy, it is my nearest and dearest who I cannot get through to, my daughter and step children in particular, with friends I have not such a problem.

    Thank you for your reply,

    Cazx

  • Hi again Caz - don't worry about them - kids are rarely sympathetic anyway. If they were interested, then as your family you could expect them to want details, but if they're not interested, they get the same treatment as everyone else!

    One of my sons felt that I would be fine if I babysat my grandchild every day, he thought it would take my mind off myself!

    I would love to be able to, but I can't. I just said "No, I'm too ill, and baby would not be safe!"

    He's happily accepted that, 'cos I made no excuses, just said it like it is!

  • Very well said, Ladymoth !!! I too am angry at the fact I have Fibro, I am in need a lot of help but wouldn't ask for it, I am to proud then I get frustrated as I can't do whatever. I don't have a problem with Family or friends understanding my illness it's the authorities, I cant get help with a lot of financial things as my Husband/Partner works 39 hours per week, I am in receipt of High rate Mobility & Middle rate cares. but most of that is taken up with £70+ in electricity, even at that I only have 2 storage heaters one in my sitting room & one at the bottom of my stair way, it is very hard to fed ourselves, hope you all have better luck than I have had.

  • Hi IBJolly - are you at home all day as a result of your conditions? If you are and you require your heaters on to help with your symptoms then your Electricity provider may give you a reduced rate. Most providers have a section that deals specifically with people living alongside disabilities -its worth a try if they reduce your rates - every little helps.

    I still work and my partner works and I know how hard things can be financially, I am always on moneysavingexpert.com checking out new ways to save money. I constantly negotiate deals, and Im quite cheeking in that I tell my provider Ive been offered a better deal and can they match it. Like Martin Lewis says they will do what they can to retain your custom (well most of them anyway).

    Take care ML x

  • Hi Caz ,

    I can understand all that you have said as I have also gone through the same as yourself, at less you have your Husband on your side, I also have a wonderful understanding Husband, I was diagnosed with Fibromyalgia, 2yrs ago after a long fight for 3yrs, I was beginning to think it was all in my head or that people thought I was faking it, I wasn't looking for sympathy just people to believe me, I never have a day without pain in my neck, back, Legs, Feet, Arms even my hands, I can't do my Laundry, I find that pegging the clothes up on the line is a major task to, as raising my arms is so sore, I loved to bake which I am unable to do as I can't mix the mixture in the bowl & banded from using the oven due to the fact that I have burnt myself on several occasions, the simplest of tasks is a huge effort, I was trapped in my house for 3wks due to bad weather (snow) I Fell last winter when I was going to the shop, I couldn't pick myself up, every time I tried I just couldn't then panic set in, luckily I had my mobile phone I phoned my husband to come & help me up, hoping that no-one else will come along & see me as I was so embraced. I can't take a bath unless my husband is at home. well I could go on & on the way to make family & friends understand what you have to go through on a daily basis is to send them the link understanding Fibromyalgia or pick up leaflets at hospital, Doctors, Chemist or Job Center, there is a lot of information about fibro on the net, my both my Son & my Sister heard a talk about it on our local Radio Station, their eyes were open wide after that, My Sister has even said to me that she that she thought there was nothing wrong with me until then, the thing is we look so good to other people thy take one look & say there is nothing wrong with her,( to be honest I have said it about people in the past myself ), if only thy knew, But then again I have myself to blame as when people ask me how I am, I reply fine thanks, Well I don't think they really want to be bothered or have the time to listen to all my ache's & pains or all the troubles I am going through, I am in touch with a lot of other people with Fibro on her. I wish you all the very best & very gentle hugs. Isla x

  • Thankyou. Isla,

    I also find it difficult that I look normal, but feel ill. ( to put it mildly!)

    I suppose it would be easier to be able to say I have fibromyalgia, although the condition seems fraught with people, even those in the medical fields, who don't believe it is even real. I realise it is just a label, but it helps to have a diagnoses.

    I feel as if I am in no mans land until I do.

    I will just stick to saying I have arthritis in my spine, which I do.

    I feel so hurt that my daughter in particular acts as if I am making this up, to the extent that she will not even answer the phone to me, after I got fogged up and misunderstood what she needed from me.

    I just wish I could explain in a way that made sense to her.

    I realise that we are all different, and it is difficult for me to pretend it does not matter, and just act as if I am not desperately upset.

    The point is I am, and just saying i am ill, so deal with it, does not seem to do the job for me, although it obviously does for some people.

    I will pick up some leaflets in case I do get to speak to her again any time soon, and also for the others in the family who expect me to carry on as normal.

    Thankyou for sharing your story with me, and I hope you feel better and get all the help you need and deserve, as you say at least our husbands understand.

    Cazx

  • Well caz..

    I hope all this info has lifted your spirits and let you

    know there are others out there!! i have suffered symptoms since the age of 19 years and am now 43 (feel 93!!) I was diagnosed when it kicked in properly in October 2008,unfortunately i don't get the remissions some other people get,mine is permenant since 2008.

    I can not recall some very large chunks in my life and will swear ive never been to a place someone tells me in have!! lol.

    I am on an antidepressant to and am not afraid to admit it and say it helps me in many ways!

    I also joined a fibromyalgia site on Face book

    facebook.com/groups/2216834...

    The people on there are great!! it does not show up on your normal news feed and you can rant ,swear,moan , discuss, and talk about diff treatments people try and are on...basically we really support each other and it's great to know they are there and some of them can give you a good laugh too!! which is always an uplifter.

    maybe i shall see you on there sometime??

    Take care and gentle(((( hugs)))) Tracy x

  • Thanks Tracy,

    I will look into this site. I really do feel better getting all these replies, thank you all so much!

    Cazx

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