You know it’s funny. You never realize your strengths and insecurities until you are forced to face the head on. I’m a 54 year old male and most of my life I have felt, for the most part, secure. Secure, that I have a loving and supportive family and friends, as well as a secure future.
Then a few years ago I started having various health problems. Eventually these problems led me to getting Fibromyalgia. About six months ago, I could no longer work due to the pain and fatigue, so I filed for disability benefits. Since it takes so long before you can get approved for disability, I decided to sell my house and live off the equity. This was difficult for me because a house has always given me a sense of security, but I had no choice because I had no job, or any saving to live off of.
Once I could no longer work, I watched the few friends that I had fad away. Mainly because I could not go out and spend money with them to do stuff, or physically do what I used to be able to with them as a group. When I told my family about my condition they became distance. When told them i had to sell my house and had to find a new place to live, only my 27 year old daughter hinted that she would not allow me to sleep in my car, but never really offered to let me stay with her. You see she just had a baby and I don’t think her husband would want me staying with them for any length of time. My own brother didn’t even offer to let me stay with him until I figured out someplace to live, yet when he was having marriage problems, my door was always open to him, or any of my friends and family if they needed a place to stay.
So, with all that said, tonight I am writing to you from a cheap Extended Stay Motel. I will admit that I am having a lot of anxiety staying here. Anxiety is another condition I suffer from, so you can imagine that if it was not for my medication, I would be in bad shape.
I feel like I have no one to talk to, or that anyone really cares about me. When I was unemployed and looking for work, I had a lot of time on my hands. So I took the time to write a book called, ‘Faith of a Vampire’. It was something I was very proud of. Once I published it, I told all my family and friends, but only my daughter and one friend bought a copy and no one has yet to read it. You can imagine how that made me feel. They wouldn’t even spend $0.99 for the ebook. It opened my eyes to take a hard look at them, and myself. I can only think that they must not think I’m a good enough writer to write a book, let alone buy a copy and read it.
I also believe that I have been part of the problem because when someone ask me how I’m doing, it must sound like all I’m doing in complaining due to my condition, and who wants to hear someone complain all the time.
So now, as I sit here alone, reflecting on my life, I wonder what my future will be like.
I am a Christian and believe that there is a plan for everyone. But when you have no friends, feel like your family does not care about you, and you can’t see a productive future, you ask yourself the hard questions.
As a man, I think we need to feel productive in some way, but I can’t see a productive future for me. I will admit that I have wondered if I would be missed if I was no longer around, but it is my faith in God and wanting to see my grandson grow up that keeps me going. Therefore, I will do my best to face my fears, my pain, and loneliness, and pray for…whatever God wants for me.
I have great respect for those of you that have lived with Fibro for many years. I don’t know how you do it. I pray that I can endure like the rest of you.
For those of you who took the time to read this, I thank you. I guess I just needed to vent and you guys are the only people I feel I can write to and understands what I’m going through, evey though your on the other side of the world.
So for now I will wait, pray, and hope for the best.
Gentle hugs Mark. You have been through the mill, haven't you. Life can seem so unfair at times. We struggle to do our best and yet it never seems enough.
Like you, a lot of my 'friends' disappeared as soon as I could no longer do my job. And, of course, the financial side of things prevents joining in their activities even when I feel well enough.
I struggle with the sense of being of no value now I can't work and feel that what I do contribute is worthless because I can't do it to the standard I expect of myself. I have just finished some one to one sessions of CBT with the psychologist at the pain clinic which has helped me identify things that help me and things that hinder. I would recommend asking your ~GP to refer you to the pain clinic. The one I attended was brilliant and they put me on a Fibromyalgia management course which did help enormously.
I think eventually we do come to accept that Fibro has changed our lives but it doesn't mean life won't have anything good and positive to it. Keep fighting Mark and keep faith, you'll make it.
It is a shame no one else bought your e-book, did you market it at all ? I can understand selling your house so you could live while your disability is sorted but hey you seem to have ended up in a sad place (I hope you don't mind me saying that.
I know our friends dissappear ut you must try and get about a bit if you can talking to people and smiling with them and best of all laughing with them is so important don't shut your self away!
I have great respect for anyone who has tried so hard don't give up will you.
Take care with best wishes and smiles
xgins
Hi Mark it is so hard when something like this comes along and turns your life upside down. Totally feel for you and hope that things will soon start to improve.. lots of hugs sue xxx
I wanted you to know you are not alone, and you have found a good forum of fibro friends!
Life certainly throws some curve balls at us, and some more than others!
I think once your grandson grows up a little, he will bring much purpose to your life. They don't see the thing you can't do only the things you can. I know this from experience, as have had the most terrible flare the last few weeks. I have a grandson who lives next door, he is 5. When I said to him, I so wish I could run around with you, ( yep it's true my eyes were welling up with the ache & desire to run round the garden playing chase or football), he just came up to me and gave me the biggest and loving hug and said he loved me and it was fine I couldn't do these things, then went on to list the the things we could do!). He is the light in my day. Seeing everything with wonder and questions. I know he has helped me so much ad I feel I can give to him, my time, my patience and complete undying love for him. I don't feel nearly so worthless and I very much hope you will feel the same with your grandson.
I also think once the disability benefits are sorted you will feel more in control of what you are doing and going to do. I think there is a real art to accepting the condition, but not let it swallow us up. We need time to adjust to how we need to manage our days. Once all these things are ironed out, hopefully you will be able to see the days more clearly. There might be a local fibro group in your area, where like minded people meet to chat.
Golly, I've probably sent you to sleep! Apologies for long reply. I just so know how you feel. Chin up, hang on in there, it will get easier and feel more familiar too. X
Children are amazing. I hope that my grandson will understand why I can't do certain things as he grows up.
in reply to
Hi Mark. My grandaughter was 5 when I was hit with fatigue and could no longer spend hours cooking and baking with her. nor could I keep up when walking. I explained to her that my battery was flat and that the charger didn`t work properly. she thought it over then said ok
Now 2 yrs on she will ask if my battery will work enough to do things. I hope that this may help you to explain fatigue to your grandson. Sue
Hi Mark,
I am so sorry to hear that you are in pain but I'm glad you decided to vent on here. Your situation very much mirrors mine except I am 37 and never had children. I am lucky that my parents let me move in when my job and home went, but it is far from easy. In the same way I never expected to be living at home at my age, after all of my hard work, they certainly didn't expect to have me come back either.
Families are difficult at the best of times, and in tough times things can get fraught. Is it possible that your independence may be the reason why your daughter or brother haven't asked you to stay? You strike me as a very proud man with traditional values, and I'm guessing that asking for help doesn't come easily to you. I just wonder if somewhere a link in the communication with your family has been lost perhaps because of your sense of needing to be the provider, and their expectation of you in that role, without vulnerabilities.
One thing that I have learnt in this short space of time is that my family are grieving too. I was angry with them for pulling away, my sister was particularly distant and my father bad tempered, where he had been the most placid man before. I can see now, and through asking them, that they are fearful of what will happen to me, of how my life will turn out, and they can't deal particularly well with the ill me, because it creates these feelings within them. I really had to break them down to find this out, as I thought they were sick of me and didn't want me and my misery and complaining around. It's only a tiny step, but it's a step away from the desolation I felt only last month, when my thoughts echoed yours.
Friends are different, I'm left with 2 out of the many I had. It's tough, and painful, and I'm sorry you are going through this.
I truly believe that you will come through this, and I don't even have the benefit of the faith you hold. Your health will get better now that you are not working but only with great care and effort, which will seem overwhelming now. This forum is the place to come when you feel alone, and you will always have support here. In the meantime, I hope that you are able to resolve some of the pain that you feel with regards to your family's response. I'm sorry if I have said too much, but I hope you can draw some comfort from this site. Good luck my friend xx
I have read your post with a great sense of pain and sorrow for what you are having to live with now, and how your life has been changed by the dreaded Fibro.
In all honesty, and you probably have gathered this, but there isn't a great deal that I or anyone can say to change your life back to the way it was. However, saying this, you have the ability to change your own future for the better! I am presuming that you live in the UK?
Firstly, I was wondering if you were getting your disability benefits now? If so, you at least have some money in your pocket, especially if you are claiming all the benefits that you are entitled to? I was wondering if you have approached your local council for priority housing if you are now registered disabled? The council can give you a flat under this scheme. if you are not working, then they can pay the majority of you rent and council for you.
I am sure that once you have a secure home that you can call your own once again, everything else will start to pick up for you? I was wondering if there were any local Fibro groups in your area that you can contact and join, to make some new friends who will truly understand your plight?
Please do not be offended but I have pasted the telephone number for the Samaritans below I have done this out of concern and friendship for you. Please ring them if you ever need a friend to talk too. They are there for you 24 hours a day, 7 days a week. Please remember that you are never alone:
Telephone: 08457 90 90 90
I want to wish you all the best of luck and the strength to rebuild your life my friend, we are here for you if you ever need our support.
Hi Ken, thanks for all your advice and information but I live in the US. I have hired a lawyer to help me with my disability claim but I hear it takes a while to get approved. I just hope my money that i got from my house does not run out before I am approved for disability. Once approved, then I can look into section 8 housing. Even though I'm in the US, it help to talk to others who understand. Thanks again.
Thank you so much for this. I sincerely hope that your money holds up until you get your disability. I presume that section 8 housing is the same as social housing is in the UK? With the preference on disability accommodation?
My heart really goes out to you, as nobody deserves what you are having to endure, and I really want to wish you all the best my friend. We are always here if you ever need a friend
Hi there mark so sorry to hear your going thru all these problems on top of this bummer of a desease, you always find out who your friends are when you have an ongoing illness and no money, well you are amongst friends on here, this brilliant site, hope you have a better day tomorrow...gentle hugs and a handful of sunshine coming your way...Dee x
Yes you do find out who your true friends are in times of need. You do find out who your true friends are in times of need. Once I told them I was filing for disability because I could no longer work, a few told me I was giving up on life. The truth is they gave up on me. Thanks for your support.
You are most welcome mark, your right this is a brilliant site, and we have fun days too, which takes us away from our pains if only for a little while...look forward to reading your posts...Dee
Thanks everyone for your kind words and support. I live in the US and have looked for other Fibro support groups, but this one by far is the best. Just knowing that there are people out there who understands my condition and is willing to take the time to respone to me helps a great deal. Thank you again.
Hi Mark, sorry to hear what you are going through. Just wanted to let you know that 7 years ago, when fibro had really got a grip on me, I was made redundant (as a way of getting rid of me). I had no income, I left my partner within weeks, my daughter and I lost our home, my beloved garden, and our beautiful dog. We lived in a temporary hostel for 7 months and had no income other than £20 pounds a week child benefit for the seven weeks it took to receive social security. I felt that I had lost everything in my life , apart from my daughter in less than a month.
We now live in a lovely flat, we are settled and happy with, from my window I can see the canal and the nesting swans, we have a gorgeous only slightly psychotic cat and my daughter has excellent reports from school. I still battle constantly with fibro, arthritis and migraines, but I still feel much calmer and happier than during my 20 year reltionship.I teach 2 hours a week, this being my present limit. I have no friends left from the past and no family but I made a new life, one which suits me and my daughter. You will too, one step at a time. All the best, Shazzzy.
I'm sorry to hear of your predicament. My husband and I are in a similar situation. We are having to sell our house as we don't know if the Government will continue our DLA. I'm coming up to 66 next month and my husband is coming up to 58. We have suffered from Fibro for years and all our friends/relatives gradually drifted away as they couldn't understand why we couldn't do the thing we use to do. We are struggling on our own and if we ask for help no one wants to help. They say they do but they actually don't.
I always had open house and still do to an extent but rarely get visitors now except our bible teacher that comes over when she can. We are both bible students so value our faith as it helps us get through. I use to be a mental Health counsellor until things got so bad with me regarding health/fibro etc. I had various health issues and use to spend about 6 months of the year in bed with my dear husband coping as my carer. Me on massive doses of morphine for terrible pain and migraine. Officially he still is. The medics discovered I had coeliac disease and assorted symptoms due to medical 'neglect,' doctors not picking up on things and telling me it was all 'nerves' and depression' until I went to a private practitioner. She suspected marked Osteoporosis initially and wrote to my GP of the time and he was not too happy I'd been to a private practitioner but I was desperate as I could hardly walk. But in the end I got treatment and was diagnose with Fibro as well as arthritis, IBS and nerve/bone damage. I'd already had 3 mini strokes when I was 28. Trouble with Fibro we look healthy and people find it hard to understand how it effects us. Having been a counsellor I understand how it does effect people but never thought I'd end up with it although I was told I had it for years but thought my 'aches and pains' was due to other health issues and getting older! I totally rely on my faith and every day ask God to help me get through another day and I refuse point blank to give up. I can't do as much as I'd like to but do what I can especially with my dear husband also suffering. I think personally from experience that men do find it harder to cope with as I know my husband did but slowly he has come to accept it - doesn't like it but is accepting it - and both of us take care of each other as best we can. We try to have a laugh about it even. I'm lucky to be able to share with my husband but I wonder what I'd be like on my own. My husband and I are really stressed at the moment trying to get our enormous house (6 bedrooms) sorted out as over the years due to health issues it has taken second place. We are slowly getting there but as I said not know if the Government will call us in for medicals even though we were awarded DLA for life we need to sell our house and get something smaller, just in case, so if our DLA is stopped then we will have to manage on a much lower income. This house was a money pit so no real saving as such. I can sympathise with how you must feel and how friends/relatives have walked away or avoid coming to visit. My older sister and my older brother want me to take care of them but I just can't although my husband and I do try to offer some assistance when necessary. Both can still get around and have lots of friends which is nice for them.
Just don't give up but keep your faith as that is most important. God does listen I'm sure of that as I talk to him all the time - reckon he puts in his ear plugs after while! Also avail yourself of your GP and get referred to a pain clinic. I had to put my foot down with my new GP over all this as I felt I was being patronised, and not really listened to. It did work! My husband actually got chucked off my GP's panel when he was trying to look after me in my really bad period for making a nuisance of himself but I think my GP regrets it now as she it really nice to him. He has another GP, different health practice, but in a way that had turned out for the better. I get on with my GP and she sees me a sensible person now (wow that is something! LOL!), especially as I reduced my painkillers right down on my own without her help. Depression, stress and anxiety can make things worse with Fibro so even though its hard try to keep occupied as much as you can and try to focus on external things. As you said most men like to feel productive. My husband went through a bad stage but now he says he feels better by getting on with something even if it's only a small thing on a bad day. Our sympathy and prayers are with you Mark and on this forum you are not alone as I'm sure you can see. There are people that care about others with Fibro even though they suffer terribly themselves. Even though others have deserted us I still care about people. Sometime people just don't know how to 'handle' us especially when we look healthy hale and hearty!! I've tried to educate people on Fibro and how it can effect people so many different ways. But until one has been through the mill it is very hard to understand other people with Fibro. We care though so don't worry about venting your feelings as that is actually healthy to let go of them as I use to tell my patients. Have a moan here by all means as I'm sure no one minds in the slightest. Our thoughts are with you and keep up the faith as that helps no end as we have found from our own experience.
Hi Mark, I read your post with sadness. It's an awful thing when even your own family won't help you, especially when you have gone out of your way to help them! Like they say - you can choose your friends but not your family. Luckily, I have great support from my own family as many of us have a disability of some kind. My daughter has trouble accepting it - she's young and I suppose she thinks her mum is invincible! I used to be, but I've had to adapt to, and realise my limitations. One of my friends in particular told me she was going to make it her mission to look after me. I haven't seen her in well over a month! I don't expect people to drop everything to help me, I just want a little understanding and consideration. I bet you feel the same.
I feel I'm not in a position to advise you, but I hope you keep your chin up and don't forget, this page is fantastic and there is always someone here who'll listen to you. Believe me, I've ranted and raged on here and I've had the most wonderful replies from such lovely people.
Thanks for the positive thoughts. All I can do is take it one day at a time. Thanks for your reply. It does help knowing that there are people out there that understand.
I am so sorry to hear that you are experiencing such difficulties with day to day living, on top of the Fibro pain/discomfort and debilitating the condition causes!
Iam a 53 year old female fellow Christian and my heart goes out to you! you can choose you friends but can"t choose your family, I don"t like to judge others but you seem to be sadly so let-down by your family, leaving you with no support or offers of help!
This is a wonderful, supportive Forum so you never have to feel alone again. There is always someone on hand to just have a chat with, I have found it a tremendous Support/help off the caring Members of this Site!
Before I became so ill with ME/CFS/Fibro I used to be ferociously Independent. My husband worked 12 hour shifts 6+ days a week, so I basically brought our 3 sons up on my own. Did absolutely everything, Cleaning, cooking, washing ironing, school runs, shopping, taking care of finances ect.
It was a shock to the system when I became too ill and Consultant advised my husband to give up his job to care for me as I could"nt do anything for myself. Also our eldest son is disabled in a Wheelchair, he also has Fibro but other ailments, i.e. Rare, Progressive Incurable Fatal Syndromes/Dystrophy. So I was his main Carer too.
I can totally empathise/sympathise with you as he gave up an excellent job with salary to match. We have just about managed to pay the Mortgage by the skin of our teeth and there have been very worrying times, we thought we would loose our home.
Unless you have suffered with this insidious illness or lived with someone who has it them selves, nobody understand just how difficult life can be, the relentless pain, discomfort, debilitating way it makes you feel, to name but a few!
There is a saying "When the chips are down you find out who your true friends are?!" This certainly seems to be the case for you, I am sorry to say!
You must be heartbroken to have lost your house to have to live, bless you. I hope you don"t mind me saying but your family seem to be of little or no support to you what,so ever!
I found that "we" as a couple lost lots of friends when I was unable to go out or have them around here for dinner, or leave their children to come over to stay over-night like I used to be able to do! These are Fair weathered friends Mark!
You mentioned you are a Christian, do you go to Church? From experience whilst I was able to get to Church I found the true meaning of Christianity and was shown so much kindness, compassion, genuine care, help and support!
As I am too ill to get to Church @ moment I still have lots of friends who wish to visit, have a chat over a coffee. Our Vicor visits to give Communion and general support.
It is only a suggestion, please don"t think I am intruding any way but could"nt you join a Church nearby and perhaps get some outside help and support, you sound as if you are in badly need of some help, company and guidance!
Fibro does strip you of your Identity, it has mine!
Your story really touched my heart, I sincerely hope and pray you will find the right type of support, help and kindness through the Community. Or maybe join some Social Groups if you are well enough to get out just for compainionship/comapny?
You can always visit this /site which up-lifts me, makes me apart of a virtual community.
Whatever you decide to do, I wish you luck and pray you find some happiness and peace of mind, you truly deserve.
Wow, what a life you have lived. I don't think I would have the strength to be able to care for someone feeling the way I do. You said that fibro strips you of your identity. How interesting. At the moment I do feel like I have lost almost everything. I just hope my disability will be approved before my money runs out. Even if approved my family and friends situation will be the same. I guess I need to get out and find some new friends. Sorry if I'm not making much sense. It's 4:00 in the morning and I need to try and get some sleep. God bless and best wishes to you as well.
Hi Mark, Thanks for your reply. All I can say to you @ the moment, keep the faith. Try your best to stay positive, hand your life over to God each day. You have joined a Fantastic Forum where I have been supported, helped, the care and empathy shown to me, restores my faith in "Man-kind!!", through this wonderful Site!
Hi Mark. I’m sorry too there’s little help I can offer with not knowing how things work over the pond.
You have an awful lot going on. I still think faith will get you through, even if the church doesn’t and I wonder if God is answering prayers but not in a way we expect. Years ago I thought it would be good to do without a car and to work and play closer to my home town. I was made redundant at work, had to sell the car and even one of my volunteer organisations moved my base of operations more locally with the result I rarely leave the city limits. The best work I can get is part time menial tasks in cycling distance. And now I’ve been diagnosed with fibro on to of osteoarthritis and a new knee – luckily we have a good health service and that cost me nothing. However it does seem God has a plan for me but I still don’t know what it is. Your situation seems demoralising and I feel for you. I just hope the one step at a time is not a huge journey. All I can offer is prayer and best wishes and a transatlantic gentle hug.
Sorry it took me a while to respond. The motel internet went down. Thank you for your prayers. Mine go out to you as well. I know other people have it worse than I do but it's still hard. I know I need to find a good church or force myself to find new friends. It's just so difficult to get out there when you feel like crap. Like you, I hope that God's plan for me is not going to be a hugh journey. I give you a transatlantic hug back.
The beauty of social networking - for this is what it is, there's no pressure to respond or take part in any particular thing. And being where you are you're at least 5 hours behind us.
My heart goes out to u as you struggle through such a terrible time. I had a stroke in nov 2012 and life has never been the same, i was working at the time and did return to work for a short time in jan 21013 but i was in so much pain and always tired that i had to go off sick again... I ended up lost and hid away from family and friends as i did'nt understand what was wrong with me, friends did'nt bother to call after a while but i do have wonderful children and grandchildren that like u keep me wanting to see another day, i've had dark thoughts and wished that i would'nt wake up but i'm so happy that i'm alive now..
Sadly i was signed off as unfit to work last nov since then i've nearly lost my house due to arrears on my rent, i'm now having to pay most of me benefit on rent arrears which leaves very little for heating and food, i've had to wait 6months to get my assessment for PIP benefit and had to call on the help of my local MP for help, my assessment is on 31/03 and i'm so scared as i dont know what to expect, lol now im scared i'm having a flare up, my body feels like its on fire my head hurts and i cant sleep......
Hi Mark, I read your post with sadness, it is terrible to feel so alone, but remember your faith and beliefs and draw on this at this time. I understand how you feel about your family, been there, done that. I don't believe it is because they don't love us, I think it is too big for them and denial is easier for them. Everyone has given you wonderful advise so please try and hang in there, can you find some sort of activity that will build your confidence and help fill your days, I find doing something small for someone gives me pleasure and gets me through one day at a time. Take care and keep us posted.
Hi denvajade, thanks for your reply. Once I get out of this motel, I'm sure I will feel more at ease. I do like to write as I mentioned, and I'm working on my second book. But I get tired very quickly so it's taking a long time to make any progress. However, I agree that I need to find an activity that gets me out of the house. I'm not sure yet what that will be, but like you said, I will take it one day at a time.
mark, hello I and a lot of other folk on here will know how you feel, I am blessed with a lovely family who care about me however I know that they can get aggitated with me , and as for friends they can walk away thats there problem not yours, I have been there its because they do not how to help you.
i do not believe you are alone you have us all and you have your faith , things will improve, gentle hugs
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Letter to MP's will it do any good? Doubt it but you have to try.
Hello
Lady Julia 
Mum trying to understand what her daughter with fibro feels like
We all understand the day in the life of 'Maddie' don't we ? 
