Posted several times over last few months as have has a very difficult last 2 years with multiple problems including DH diagnosed with early dementia plus his mobility is very poor. I have had fibro over 30 years, diagnosed 10 years ago with multiple symptoms, including constant head, neck andshoulder pain, digestive issues, back pain, degeneration of spine, spondylosis, weakness of hips and thighs plus tingling in feet, lower legs and hands. Underactive thyroid, chronic insomnia vivid dreams waking me with electric type shocks.I find it difficult to cope as all responsibility is on my shoulders although tobe fair dh does help with some household tasks when asked, but most of time he just sits in chair nodding off in front of tv. If we go out I feel like his carer, but this causes constant rows as he insists he is fine, when he isn't. Added to this he runs a social group and now feel i am having to watch over him wih this, which i could do without, and i feel very vulnerable and noone understands how ill i am and what effort i make to keep going, not even my grown up daughters. They seem to think because i am still doing things nothing is wrong and so do called friends. I asked the doc 3 weeks ago to put me intouc with a social worker and asked to be sent for physio, but i have heard nothing and I am feeling very vulnerable and alone atthe moment. I cannot take medication as it makes things worse, other than paracetamol at night to try to help me sleep. could do with some support but there is no one. wouldn't feel so bad if i didn't try to help anyone in my circle who has a problem, but is all seems to be blown back in my face. No one seems to want to help and tis is making me bitter, which i don't want to be.DH seems totally indiffferent, says he cares but won't even give me a hug, if I ask he always has an excuse why not. I don't usually get this low, I can usually shake it off, but today I just feel sorry for myself and feel like crying. I hoped by writing things down would help. I will wait and see. Thanks for listening.xx
I am feeling worse because two so called friends took the mickey out of me tonight lauging saying i was being touchy, which i suppose I was, but Ithey wouldn't have wanted to know the reason why and I am wondering why I am bothering with such people, but i have no other friends.
Just as a postscript this has been prompted because for the last 2 years nothing seems to have gone right, no matter how hard I have tried, and I have tried so so hard, but there has been one problem after another to sort out, some trivial others quite serious, and whereas before fibro I would have easily dealt with them what with head pain and fibrofog I have been overwhelmed a lot of the time. I have sorted things eventually but it has been a nightmare at times,. and I feel a real saddo but could really do with some tlc and pampering but I know there is no way that is going to happen.
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ShelWhitt
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Oh ShelWhitt, I feel for you. I felt like that, vulnerable and unsupported after my husband's suicide, and left with two children to bring up solo.
Can I suggest you have a look though some of the other Health Unlocked groups as well? You may find one which specialises in Loneliness and support.
With your hubby's Dementia, I feel you need more from your GP too, ask about Respite, even if it's only an occasional day for you to be yourself, doing what you want to do.
An occasional visit from a social worker would not go amiss, and might give you a listening ear.
With your physical problems, it could become very difficult coping with a partner who is unsteady on his feet, and is potentially dangerous to the pair of you. Please don't be too proud to seek help, there's no shame in admitting you can't cope. It is always the 'ones who can' who get forgotten, because others get so used to relying on them.
Your daughters need to have a swift kick where it would do them some good by the sound of it, somebody needs to read them the Riot Act, and as for those so called friends, Well, they aren't much in the friendship line.
If you get the chance, get out of the house for awhile, even if its just to sit by a lake or stream and watch the wildlife.
I you live in a village or town there must be things you could join, such as craft or Art groups, reading groups, many activities which work on the mental rather than the physical side, to keep your brain engaged. I find it helps me no end, and I have little mobility nowadays. Getting out to a group activity or two would help you find more direction and probably more friends too. I'm not one for mindless chatter, or b*tchcraft, so a craft group would be better and help you feel more of worth.
Please try, and keep on at your doctor, or even self refer to Social Services. They can suggest lots of things to help you.
Thanks Midori. As far as daughters are concerned they have their own problems. I know I am making excuses, but I fully understand where they are coming from. I am still doing mostly what I did 20 years ago, so they think there is nothing to be concerned about, They don't see me crash every day, after pushing myself to do things.(I don't think they would believe me if I did tell them - half the time i can't believe it myself). I know I should pace myself and not have stress, but unfortunately life in the real world isn't that simple. Because of their attitude and more or less telling me everyone has problems and to just get on with it, I try to put a smile on my face and ask about them when they do visit, it seems the best option without causing rows. Daughter one is worried about redundancy, (works in a bank - long hours etc.). Plus she had a melanoma scare in the summer (thankfully now resolved.) She is also going thro the menopause and last year her husband had a stroke (thankfully now practically back to normal) , all whilst her son was in last year at uni , and had a blip - decided to drop out - thankfully didn't, and he graduated this summer with a 1st. A piece of good news for a change. No. 2 daughter suffers with migraines and back problems - I think she might be heading my way - I do hope not - plus her hubby is a long distance lorry driver, away most of the week, also with concerns as he has DVT, and she is also having a ' a very difficult ' time at the moment with my 13 year old granddaughter, both at home and school, which we are trying to support her with. I do manage to get out a couple of hours twice a week to 'bingo' with my friends but they are much younger than me and I try not to 'moan' as there is no way they would understand or want to listen, and I am not about to jinx things as it is my only outlet/respite. No one is perfect and on the plus side and we do have some laughs. so that is a bonus in itself. So as you can see things are not easy, and I am aware that I am not alone with my problems, but hings are not all bad all the time - just most of it - that is why coming on this site helps so much, we can vent without being judged and be listened to by people who do understand. Thanks so much. Take care x.
Well done for reaching out and I hope you feel a little better supported by your fibro friends now. The dreaded fibro leaves me feeling over sensitive to comments of others too and it's ok to feel that way. In our area we have something called iCope and we can self refer and once I made contact with them it opened up access to other agencies to give advice etc. Do you have a local dementia group as again contacting them will give you leads to other help. Another really helpful source for me has been our GPs practice nurse - she has more time to listen than the doctor and ours seems to be able to get things organised. Good luck, chin up and keep posting.
I am very concerned about you and your husband’s health and wellbeing and your situation.
I do not suffer from fibromyalgia but I do have severe Asthma; a tendency to severe Eczema and long standing depression which can be very frustrating for me.
I also have a young adult close relative with severe learning disabilities and a recent diagnosis of psychosis to look after.
Some of the symptoms of Psychosis are the same, or similar to those suffered often by people with dementia; so I hope that you will agree that I have some idea of the worry and frustration you feel. I can also feel lonely and helpless at times.
Having had a lot of contact with Social Services over the last 20 years I have learnt that you have to be firm and persistent to get ANY response from them. You also need to be knowledgeable about what you NEED from them. Frustrating, I know but that is the situation. Therefore I will repeat what a previous person suggested: You Need Respite (Adult Social Care dept) and more to the point you are entitled to it and you need it urgently.
You also would benefit, highly, from a group of people who have experience of looking after a close relative with Dementia. In many places there are Memory Cafes that provide lunch or tea; try your local library (if you still have one) or other cafes because they are often held in them once a week or month. Other friendly people with a similar experience would also help. Contact your local religious groups, even if you are not; they often contain someone who know what it is like.
In the meantime, watch something funny, even if you have seen it many times before; do something together that you used to enjoy ( preferably something simple). It Will help.
Thanks Lemur 789. Lots of good advice I will try to get myself motivated. Feeling slightly better already thanks to the wonderful responses of fellow fibros on this site. Take care.
That’s an appalling way for so called friends to behave.
You have a huge amount to contend with and spreading the load is essential.
I’m a great one for making lists, so I’d write down everything that was making my life more difficult—- and don’t hold back on the language. If you want to write sh** friends, write that ! Then work through it, with what can resolve the problem —- don’t worry at this stage how that resolution is attained.
Another list might be a help list—- e.g. grown up children can be allocated shopping, or staying with their father while you have a break, or housework. Don’t ask them, tell them. I’m splitting up the responsibilities, here’s yours for the next month.
It’s tough but it’s the time to be assertive.
My neighbour had the same with her husband who had dementia, he’d insist he could go out alone, didn’t need her, then of course he’d get lost etc.. She found she had to get quite tough.
Organisations that might help you are Age Concern, Dementia UK dementiauk.org. Samaritans will always listen to you. I’d echo earlier responses , with Social Services you have to say exactly what you want, and keep on at them. You could say you want an Occupational Therapist visit, too.
Respite for you is essential.
Dealing with fibro is difficult enough, you don’t need useless friends. It’s time to think of yourself and preserve your well being.
Thanks for the advice 06hollyberry. You will probably have picked up that my daughters are both adults with family and problems of their own, so not easy to 'tell them what to do' plus, as they can't possibly understand how horrendous fibro is, when I look relatively fine, manage to get out and about, and put a smile on my face when they visit, I've shot myself in the foot. I did go down the path years ago of trying to explain about fibro. Futile. They didn't want to know or understand (everyone has problems - its all in your head - get on with it - response) and unfortunately my husband also puts his head in the sand, even tho he is aware of how I am suffering and feeling , and he always has a counter punch, as to how ill he is. As for useless friends - I agree - but I do think it is ignorance rather than malice and we are not close friends just a group who go to bingo together twice a week, which I quite enjoy, as we do have lots of laughs, so I have no intention of being judgemental or trying to explain the complexities of fibro to them , as I know they just won't get it. They are aware that I am in pain sometimes ( no one can accept that you are in pain all the time) , so I don't labour the point m just occasionally say I am having a bad day and leave it at that. However, after the responses on here, I am now feeling more positive and think I will be making more positive steps towards getting help and hopefully moving on. Thanks to you all.
I think you must be a nicer person than me ! I’ve run out of patience with people who don’t want to understand. If I’m prepared to listen to and pay consideration to their problems, they can reciprocate
Hi, paracetamol won't help you sleep. Those friends you've got, lose them, you don't need friends like that who make you feel that way. It's not worth depleting your energy levels on unnecessary people. Focus on the people who matter most. For those of us with multiple symptoms and chronic insomnia life can get very tough at times for sure. Sometimes being wrapped in cotton wool wouldn't be a bad thing. We plod on and because we do this, people think everything must be fine and dandy. Are you able to discuss matters with your daughters and maybe say you are having a flare up of symptoms and feel unwell at the moment and need help. Let them know you have been to discuss matters with the GP and asked for support. Sometimes we try to hide how bad we are truly feeling from those closest to us but if they knew, the would only be to happy to give extra help and support. By chance only yesterday I found a phone number for a Fibro support group in a magazine. I phoned it. They hold a group once a month, they lady emailed me the news letter. I intend going next month. It looks like they offer very good support. If your not already in a group, maybe it's something you could look at. They have guest speakers also and plenty of info to help. xx
Thank you for you for your advice and concern. It has helped a lot to know there is understanding and support for each other on this site. Hope your support group goes well. xx
Thanks for your concern and understanding. Am going to try to make more of an effort, when I can find the energy. Take care.xx
Is wish l could find the words to somehow help you but I just can’t and l apologies for that.
It seems you are in quite a bad place right now with little chance of pulling yourself out. Have you confided in your GP? They may be able to offer you some CBT so at least you could talk with someone face to face.
It seems to me that your doctor would rather treat you because it would cost the the NHS far more if you had a breakdown and could no longer look after yourself and your OH.
Have your daughters not picked up on how low you are?
I hope you follow up and seek help through your doctor and who knows, if you unload on the GP you may start to see light at the end of your long tunnel.
I get how you feel. My husband had a cancer diagnose 2 an 1/2 years ago that was real to my kids he had major surgery but thankfully he recovered. He’s now cancer free. I have fibromyalgia along with a chronic lung disease and lupus all my illnesses are silent illnesses which no one understands. I care for my husband 24:7 which I’m expected to do so I get how you feel
I'm thinking you may need to get a little sneaky, and come down with a case of 'diplomatic Lurgy' of some kind, which will bring home to your daughters what you are going through on your own. Call them, say you are feeling like you have something, maybe 'flu, and need their help urgently. Yes, they may have problems of their own, but they must also remember their wider responsibilities.
Understand your thinking, but a few weeks ago I was quite ill with a kidney infection, in intense pain, twice ringing 111, lasting three weeks, but it provoked no response from my family, didn't even ring to see how i was, or whether their dad was ok, so i have now accepted that is how it will be. They live quite near, but work and generally only visit socially for about an hour once a week, when I now concentrate on asking about them, as that is the easiest, and let's face I am their mum and I do care and want to know about their lives. I know if I try to broach the subject there will be an almighty row. They don't accept how bad I am or that we need help, because they see me carrying on, day to day, and to all intents and purposes, things are getting done pretty much as normal. They cannot see the constant head, neck, shoulder, and back pain, plus weakness and pain in hips, Tingling in feet and hands, constant nausea, and irritable bowel, plus insomnia . The hours spent with the hot water bottle on the sofa, the times I have cried when I can't sort out some minor problems thro brain fog and memory lapses . The total exhaustion to do what i do, and the crashes after. They either think I am exaggerating or should be paying for some help. They accept that we aren't well, but because we are still functioning, think we should just get on with it, and it can't be too bad. I have in the past tried to talk to them , but it is obvious they don't want to know as they immediately change the subject. Maybe they do have a point. There is also now frequent rows with husband because my patience is frayed, and when I am not coping, his answer is, I do what I can, but his constant moaning about everything and everybody and lack of initiative to get off the chair in front of the tv to do anything at all, unless I nag does not help. I will get there in the end. Thanks for caring. xx
Oh I feel this one...and im so sorry that no one is really listening to you.Saying No..Im done I wont do your stuff too...is very hard but there is a limit and you can decide what to do or not..you must take care of yourself...Midori has grt ideas as well as others.Honestly, ive gone to a hotel for a break right down the road.better days ahead.Do you have a minister that might help?
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Feeling nervous and uneasy!!
Sick of feeling this way.
New & feeling a tad lost 🙈
