How do peoples family cope with carin... - Fibromyalgia Acti...

Fibromyalgia Action UK

59,439 members66,488 posts

How do peoples family cope with caring for someone with fibromyalgia

Golfer15 profile image
43 Replies

My family are good but find it really difficult living with me with fibro. I dont have the energy I used to have to do simple things like going out for the day or even going on holiday. I have lost interest in everything! I suffer with depression as part of fibro so some days I am really low. I cant pick which day I'm going to feel like this, it may be over a weekend like now. I get irritable and short tempered which my family dont like and everything becomes a major issue. I'm difficult to live with since I got fibro and my family are struggling to cope with me. What do other people do. I suggested that I go away somewhere so they can have a break from me but where do I go. They cant understand that fibro is a life changing disability. It makes things worse as my wife is a primary school teacher so she is completely exhausted at weekends too, so she has no patience for me either. She seems to think I can switch on and off this fibro and go back to how I used to be. I used to be quite easy going and had plenty of energy. What can I do to make life easier for all of us. My sons are 19 and 22 so don't like my behaviour too, and think I'm just being difficult. Can others understand my situation. Thank you.

Written by
Golfer15 profile image
Golfer15
To view profiles and participate in discussions please or .
43 Replies
Mackembabe profile image
Mackembabe

Oh David I do feel for you, we don't ask for this illness and yes no one can understand how it makes us feel, its like our whole lives have been taken over and we can't do the things we used to be able too, which of course does get us all down, how would they feel say for instance if your wife was unable to go to work or do all the things she likes to do or your sons, you'll need to try and explain yet again how it affects you, I have just made my husband read what you wrote and I think it has opened his eyes up more to what we have to put up with. I wish I could give you a big hug to make you feel better but can only send them to you can pm anytime, have you not got any hobby or something to take your mind off everything I would teach you to knit if we lived closed lol, bet you thought oh no, please try and stay upbeat as hard as it is and remember we are here for you anytime Love & Hugs Xx

Golfer15 profile image
Golfer15 in reply to Mackembabe

Thank you so much for your reply. My eyes are full of tears reading your reply. Glad you understand. I think it is only those of us with this condition who really understand. I do enjoy a bit of wood carving as a hobby, I can get lost in my shed for a while but some days I just dont have any interest. It is so difficult to explain how we feel. Thank you.

David

Mackembabe profile image
Mackembabe in reply to Golfer15

Oh David reading your reply has done the same to me am welling up here. That's a good idea of Hidden to go out for a nice walk along the beach if the weather permits, we don't want you blown away my friend, how I would love to walk along the beach love listening to the sea, always calms me, hope it will do the same for you, what do you make with your wood carving ? is it something you can expand on and actually sell at the local village sales when they have them or the church fete, am sure they would appreciate it, its nice to have a shed that you can lost in for a while but don't do it to often you still need company, is there no one else where you live who has this complaint you could meet up with or anyone else who likes doing wood carving or some one to paint them for you or varnish just a thought. Take care my friend stay in touch Love & Hugs Xx

Golfer15 profile image
Golfer15 in reply to Mackembabe

I only make shapes in carving or whittling. In my mind they are animals or fish but dont think anyone but buy them. I go to a fibro support group once a month. This Wednesday they are meeting at a garden centre for a cuppa, so I might go. X

David

Mackembabe profile image
Mackembabe in reply to Golfer15

Yes do go it will help to mingle with people and get you out, can you do any volunteer work anywhere that will make you go out, you can always take me virtually out with you for a walk along the beach I would love that, you are so lucky to live by the sea, I have all the moors etc but can't walk out them anymore, that's why my D got a motorhome to take me to different places so can still see them, could you get a little camper van so you and the wife can see different places. Keep smiling my friend we are here for you Love & Hugs Xx

Golfer15 profile image
Golfer15 in reply to Mackembabe

I do have a couple of voluntary roles. I'm a church warden and a school governor. These keep me busy. I dont like having too much free time. Have a good day. X

Mackembabe profile image
Mackembabe in reply to Golfer15

Hi David I thought you did something with the Church but wasn't quite sure, you know Fibro fog and all. Hope you managed your walk today and are feeling a bit more up beat. Love what LoneEra has put on her post going to run a copy of it. Have you seen pm yet Love & Hugs Xx

Golfer15 profile image
Golfer15 in reply to Mackembabe

Hi, yes Im better today dont know whether its because I have been on my own or because the sun has been shining or something else. I didnt manage a walk but I went to the gym which always makes me feel better.

David

Mackembabe profile image
Mackembabe in reply to Golfer15

So pleased you are feeling better today the sun shining always lifts you up seeing all the spring flowers, then going to the gym that will have released endorphins that will make you feel better, so carry on in that way Love & Hugs Xx

David, it’s lovely to hear from you, but not under the circumstances. I feel for you, as cfs is ruining everything to. It’s frustrating for us and our loved ones, virtual hugs are floating your way my friend.

The only thing I can suggest, is your beach, a long stroll to try and get away from circumstances that are out of your control. Also have you thought about showing them something about it on the internet. If you haven’t got the head space to look, I will find you something if you want??.

Take one day at a time, and breathe. Please feel free to pm me any time, we are all here for you.

Take care sweetie . Txxx

Golfer15 profile image
Golfer15 in reply to

Thank you for your reply Blue52. I might go for a stroll tomorrow, if I have the energy. X

I have shown things on the internet to my wife before but if you recommend something you are welcome to suggest it. X

David

in reply to Golfer15

I hope you can manage it tomorrow. I was going to suggest what rosewine said or get some leaflets sent from there so every one can read at their leisure. Good luck David, I do hope everything sorts itself out soon. Xx

DanielleGemma profile image
DanielleGemma in reply to Golfer15

I’m so sorry to hear about this David. Following on from Blue’s suggestion have you tried searching for the spoon theory? That really helps me explain it to people xx

rosewine profile image
rosewine

Have they read the Fibromyalgia Action Uk on Fibromyalgia which outlines all the symptoms and also the one which is aimed at those who care for someone with Fibromyalgia? My husband actually won't read it as he says if he knew all the symptoms and all the ins and out how I am suffering it would make him even more depressed than he is. I am fortunate that he does see that often I am struggling as he always knew me as a very vibrant, outgoing person always on the go who was a coper. The only times I am snippy is when I am in alot of pain. Whereas until recently I always tried to hide it if I now know it is going to be a bad day I tell him I am struggling and will not be doing very much that day. I am fortunate in one way (poor husband isn't) in that my husband has multiple health problems which I am very supportive of so with us both being ill things are not so much of an issue as it would be if he was as fit as a flea.

I can understand that it is difficult for fit people to understand as we can be so up and down even within the same day as Fibro is such a peculiar beast and if like you you have it coupled with depression it must be doubly difficult. My husband has depression and he feels exactly like yousay no real interest in outings, he talks earnestly about holidays but they rarely happen it has been 2 years now since we had even a short break. He is snippy without realising and I used to try and ignore it but now if it is unwarranted I must admit I say that I don't think it is fair and then he tries to curtail his bad tempter.

Ironically the last few times he has actually suggested we go out has been a bad fibro day and to be honest I gritted my teeth and went so as not to dampen his enthusiasm as I don't want him to make me an excuse for not going out. I have seen how he gets and it is very difficult for a family member to see someone suffering so sometimes they put on a kind of hard shell to cope as they don't honestly know how to deal with it. I can see that your wife is under alot of pressure as her job must be difficult enough and probably as you say at the weekend she is hoping to just relax instead of having to do thinggs. How much do your sons help, I am presuming they live with you as if they do they could take pressure off your wife?

Could you cope with going on a holiday on your own even if it is only for a week or a long weekend as perhaps the change of scenery might do you good and they might realise they miss you and be more tolerant when you come back. My heart goes out to you as it is such a difficult situation.x

Golfer15 profile image
Golfer15

Thank you for your reply. I have thought about going away on my own for a few days, but not sure if I could cope with too much. I have a small tent and like to go camping alone in the summer. X

David

rosewine profile image
rosewine in reply to Golfer15

I think the tent will have to wait until it is a bit warmer but would be an answer when things brighten up a bit. I wonder whether all these wet, dark weather has had an effect on your mood as I always find my husband is much worse in the winter. Hopefully the lighter days will help to lift your mood. Thinking of you.x

Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff

FMA UK's patient booklet had a small section for family/friend to read .... Would it be worthwhile getting a copy for them to read. Also Google "letter to normals" there are a few variations but it's basically a letter explaining fibro to people who don't have it.

I'm fortunate that my hubby has always done his best to understand what I'm going through, plus he's always come to support groups with me etc (he's chair of our local group) and helps out as a volunteer with FMA UK .... He also had a minor stroke, which left him with similar symptoms to fibro so he understands even more now.

My daughter only ever knew me as having fibro, as my symptoms started with her birth.... So she never had to adapt to be changing from a healthy mum to a fibro mum. Plus she also has fibro herself, so understands only too well. Xxxx

bobbybobb profile image
bobbybobb

I really do hear what you're saying. My life changed completely. I have Fibro and a few other things diagnosed one after the other and just never able to return back to work after a long period of sickness and a brain surgery on top. I was always the main wage earner in the family so there was a point where thing hit hard. Like you, my family are great but they always thought I would get back to the hyper work devout person I was. It took a long time for them to realize I would never be that person again. It's painful for our families to see us like this I think, so they get frustrated because they can't always understand what's happened. My OH is very good but he at times doesn't quite understand and I don't blame him because I think it's a fall out of living with chronic illness. We have to pick ourselves up and mend connections and find where we might fit in where we feel we are of some use and do something for oneself. xx

Dana18 profile image
Dana18

I know u said u can't do holidays but have u tried either a cruise or an all inclusive to a hotel with loads of entertainment? The sunshine is great for moods, plus it's the natural source of VitaminD3. This Vitamin is brilliant for mood, energy etc and we are all deficient of this in the winter months. Government promotes every one should take D3 supplements for the months Oct - May.

If your holiday was great for entertainment, u could lay in the sun getting your fill of D3 and the rest of the clan can do whatever they want near by...every one is happy😬👍

Golfer15 profile image
Golfer15 in reply to Dana18

Thank you for the reply. We have booked a cruise for April so that should be nice for the reasons you said.

Lanadc88 profile image
Lanadc88

Honestly I don’t know how my bf does it he’s takes it all in his stride never moans if I haven’t vacuumed one day or I’m still in bed when he gets home from work so I am really lucky. I think I find it harder to live with me than he does

Hi

I really feel for you. Fibro is a horrible illness. Do go for that cuppa at the garden centre, it will do you good and yes take that little break away, they will surely miss you. Show them this forum and also what you have written, it might make them realise how rotten you feel.

I had to take ill health retirement in June 2018due to this and many other conditions. My boss was great. I'm very lucky to have a great support network of family and friends and all of you on here. My hubby, sons and girlfriends are fab. Dave is my rock. Yes, I know I'm lucky. Please take care Lynne

cctexan profile image
cctexan

Hi David, sorry you have to deal with this.

I also battle rapid cycling moods in my bipolar( I think it’s the lupus and the other stuff that sets it off)

Anyway, I think it’s like anything I stew on, it will get bigger and worse and scarier but two weeks from now I won’t rennet that nights episode, but my marriage will

I have to make the commitment to do my best, have integrity and keep putting my husband feelings out there bc he’s trying so hard to pick up the slack, he’s afraid of me dying ( I know we cannot die from fibro) but the lung or liver could just give up, it’s not worth losing him. He’s In my corner. So I need to acknowledge I’m being a crank, I’m aware and I’m trying. Maybe it’s time for “Cindy Time” and s nap.

I don’t apologize for taking care of myself now nor should you OR your wife. You both sound like lovely ppl. Talk about your concerns. ( do some research first maybe)

A copy of the spoon theory always works! Plus I find interesting articles and essays on the mighty web site. Some of is depressing so I have to skip chunks of it

Good luck

LoneEra profile image
LoneEra

Hi David

Ooooof! What a tough post to read without Kleenex in hand. Sorry things are so difficult, but we all understand ❤️

First, some family-friendly suggestions:

I’m not really able to do days out etc at the moment, either. But we make sure to go out for lunch at least once a week. It only takes an hour - M&S cafe - so it doesn’t wear me out, but we’ve done something nice together.

The cinema is another easy option. I tend to book in advance, so no matter how rubbish I feel, we get there!

Sometimes we also have “film nights” in. My boyfriend’s daughters come round and we all sit and eat on the sofa and pick a film to watch. It’s really easy family time. We get blankets out and all snuggle up. Zero energy required 😀

As for communicating with your family, you write very eloquently. So maybe, instead of talking to your family, could you write them a letter to explain all of this?

Zoonie and I also have some visuals we like to use for people who don’t quite understand. Here’s one: m.facebook.com/Fibromyalgia...

Also, could you ever take your family to the fibro group you go to? Let them sit in and listen?

It does sound like you might need to find ways to address your depression. It can hit us very hard, what with all the pain, daily struggles etc. Would you consider taking St John’s Wort? A natural mood lifter. You could also try some CBD oil for the pain?

Are you on any medication and/or being looked after properly by the health system? Maybe there is more they can do to help you? Some physio, perhaps?

Finally, I know it’s hard, but try to be a little easier on yourself. Take care xx

LoneEra profile image
LoneEra

Also, here’s a link to one of those “letter to normals” posts as mentioned by Hazel Angelstar. There’s a few bits missing in this one (just ignore those), the rest is quite good: hantsandsurreyfibrome.weebl...

cctexan profile image
cctexan in reply to LoneEra

Hey sweets, I got a redirect notice on the link FYI. I’m interested in the letter

LoneEra profile image
LoneEra in reply to cctexan

Yes, that's HealthUnlocked that puts the redirect on :)

Here's the text (copied and pasted - and I edited slightly as that's my day job)!

FOR THOSE WHO DO NOT HAVE FMS

Hello Family, friends and anyone wishing to know me,

Allow me to begin by thanking you for taking the time out of your day to spend time with me and to get to know me better.

You see, I suffer from a disease that you cannot see - a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, whose attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike you and I. You will not see my scars as you would a person who had suffered a car crash. You will not see my pain in the way you would a person undergoing chemo for cancer. However, my pain is just as real and just as debilitating. In many ways my pain may be more destructive because people cannot see it and do not understand.

I feel like a child at times.

Just because I can do a thing one day, that does not mean I will be able to do the same thing the next day or next week. I may be able to take that walk after dinner on a warm July evening. The next day or even in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably.

On the brighter side I want you to know that I still have my sense of humour. If you take the time to spend with me you will see that I love to tell that joke to make another laugh.

Thank you for spending your time with me today. I hope we can work through this thing, you and I...I just need you to try to understand.

A BIT ABOUT ME

1. My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.

2. My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I cannot. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

3. My forgetfulness - Those of us who suffer from it call it fibro fog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

4. My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

5. My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, and odours. FMS has been called the "aggravating everything disorder." So don't make me open the drapes or listen to your child scream. I really can't stand it.

6. My intolerance - I can't stand heat, either. Or humidity. If I am a man, I sweat...profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

7. My depression - Yes, there are days when I would rather stay in bed or in the house or die. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

8. My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

9. My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appetite is broken, and nobody can tell me how to fix it.

10. My need for therapy - If I get a massage every week, don't envy me. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.

11. My good days - If you see me smiling and functioning normally, don't assume I am well or that I have been cured. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

12. My uniqueness - Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or pains in the hip, shoulder or knee, but I do not have exactly the same pain as anyone else.

I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the Internet have many good books and articles on fibromyalgia.

Mackembabe profile image
Mackembabe in reply to LoneEra

Thank you for posting this shall run a copy of as it's really good Love & Hugs Xx

cctexan profile image
cctexan in reply to LoneEra

Thanks so much! Now I got to find a way to copy and print that most excellent letter for some ppl including a couple of docs

Midori profile image
Midori in reply to LoneEra

Excellent!

Treewade profile image
Treewade

The children I live with generally understand sometimes they forget or get tired of helping sometimes it’s the ones thatvdont and other people who say I have munchousens or that I live at the docs they haven’t got a clue how I’ll I feel sometimes and won’t listen when I try to explain xxxxxx

Midori profile image
Midori

Yes, I can understand how and why you feel down. The lack of energy to complete even the simplest tasks is really debilitating, and it makes you short-tempered. Partly its the inner you telling the outer you that you are past your sell date, useless and a drain on everybody around.

I wonder if my experiences can help you. After my diagnosis,I realised that I was dealing with unresolved issues, after surviving my husband's suicide and bringing up two children solo. I had become hermitlike, hated to go out, couldn't be asked to take care of myself. GP was no real help, just doling out the anti-depressants and the painkillers. The kids were both adults and my daughter had married, so my son was the only one left home.

Well, one day I decided that it was time to stop letting my late husband control me from beyond. I told the little voice to go take a hike, basically, and although it grumbled and kept trying to force its way back in, I gradually managed to squash it way down to the point that when it piped up I told it to shut up. It's still there, ready to try to pounce on any insecurities I may have, but it is under control.

I treat my inner voice like an untrustworthy salesman, bigging up the virtues of his product, when even a cursory glance will show it as rubbish.

Your sons are at an age where they want to be independent, but still need a guiding hand, it must make it doubly difficult for your wife, the fact that you are looking logically at this situation gives me hope you can beat this. Yes, you have to admit that your physical abilities have changed, but the essential You is still within, although rather suppressed by the little inner voice.

I treat the Fibro itself as the Enemy, I make war on it every day by getting up, showered and dressed. I do not take antidepressants any more, as I find they give the inner voice too much control. I say to the Fibro 'OK, you have robbed me of Rock climbing, Horse riding, Archery, Fencing, Driving, Ballroom dancing and other things, but the Line is drawn HERE! You will not take any more from me without a fight!'

I make sure I have interests outside the home, there is crochet club (Mondays), usually my Tesco order to arrive Tuesdays, Wednesday, (last week of the month) is Welsh Conversational class, and I'm finding new things to try as I have just moved into a Disabled bungalow with my son, who has now become my official carer. He has already made great friends here, with similar interests.

We both have a great interest in History; there is a great museum in town given over to the Coastal Command of WW2. My father was RAF, so there is an interest in common, my mother worked at Vickers, firstly on Wellington Bombers, then for Barnes Wallis, (the inventor of the bouncing bomb, used by the Dam Busters). We may both volunteer there soon.

The people here in Wales are much more friendly than in England, OK, they may also be a little bit nosy, but I can live with that.

I hope I haven't overwhelmed you with information, but have given you a hint of possibilities that you could try to take back command.

Cheers, Midori

SusieSquirrel profile image
SusieSquirrel

That sounds so familiar.

My family don't cope well. My husband will give me a hug etc then he's done his bit for me.

My 21 yo daughter is fantastic and she'll come to do odd jobs and do my mani-pedis.

My 25yo moved to Bristol a few years ago and won't come to terms with me being like his so we end up falling out.

My parents are awful. Both 72 and fit as anything. They only live a mile away but don't even ask how I am never mind come over to see me.

They are both of the opinion that it's all in my head and there is no such thing as depression. My mother has polymyalgia so should know better but thinks because Meds worked for her they should work for me and I should get up and carry on like nothings wrong.

We that was a nice whinge lol.

Come on up to Durham beautiful countryside, we could look at the hills from the car because by God there a b*gger to walk up.

Spring is just around the corner and hopefully things might get better with the weather

Spider395 profile image
Spider395

Hi sorry to hear you are feeling so low. I don’t know if this will help but when I was first diagnosed with Fibro my pain was out of control, I felt really overwhelmed & basically didn’t know what to do with myself. I was going round in circles, not doing much & getting myself more upset. My daughter gave me a diary & told me to write a simple thing in it each day I wanted to achieve. I found that this simple action strangely helped & I was able to gradually add more to my lists. I felt it gave me some degree of control over things. It’s also a physical thing that your wife could see to show you are trying to take some action & control over the situation. Start small & build.

I hope you find a way that helps you. Take care.

Krista88 profile image
Krista88

I completely understand what u r going through I have 4 kids under 7 and feel horrible that I can't take them to the park on a nice day or simple stuff like playing in the garden as the pain the next day is terrible I also suffer with depression and anxiety which makes it ten times worse but I think you need to sit down with your family and get them to read these comments to help them understand that fibro isn't just us being lazy or that we can't be bothered is actually a really painfully disability just because people can't see it or they see us on a good day doesn't mean it's not sorry if I've gone on a bit but if me kids can understand I'm sure urs will be able to get there head around it eventually good luck x

Malwimmy27 profile image
Malwimmy27

There's a "letter to family" this isn't the exact title, if you type in the above it should come up.

It explains to your family what it's like living with fibro. It's written in such a way that makes your suffering easier to understand.

I'm sorry to hear you're having to deal with fibro aswell as the way your family react to it and you.

I really hope this helps. You may find another member has suggested this too (and with the correct title!).

Also the spoon theory is another good way of explaining the fatigue.

I hope these along with the suggestions of the other member's replies help.

Al10 profile image
Al10

You have a shed. A bolt hole for hiding maybe,? Is there room for a comfy chair, kettle etc.could be good to get away to read the paper(I don't know what fellahs do in sheds). A place to regroup snooze? To hide your sorry depressed arse for a while. You can't always be cheery. It can feel like living a lie painting that smile and you can feel resentful if you feel you have to. Hence maybe how we get snippy when we imagined us nicer.

Our town has a man shed club🤔🤗 sounds jolly. Good for blokies what need space? Don't we all need that🤯 partners and family can't be everything.

margaretpaloma profile image
margaretpaloma

So very sorry to hear this. I am retired so problems are maybe more manageable. We moved to Spain expecting to travel a lot. The pain stopped that but we thought after my hip ops I would be better and I am still limited. So that's a disappointment.

My husband is an absolute rock. He copes by having his own hobbies so when I am flaked out he has interesting things to do. But he has,of course, a bigger share of the house running to do and he has his own health problems. We try, as much as possible, to conserve our energies by having help. The gardeners are here as I write this. Cleaner arrives in an hour, we have our shopping delivered. If we were not able to do that it would be so much harder so I feel very lucky.

I find I have to ration my energies. I know if I have a relatively active day I must then have a quiet one. I try only to do one thing a day. We love classical concerts but if we go to one I spend the day relaxing to conserve my energies.

And I too have a wonderful hobby, I make jewellery and am just taking it to a new level with glass fusing and silver clay work. My husband is always thrilled when I have a good day and produce something new to show him, and as his hobby also is creative it gives us something to talk about, the techniques we use and the research I do when I can't do anything physical.

As far as 'holidays' are concerned we accept that I will spend some of the time resting, so make sure we have a hotel or apartment that makes that comfortable, but we don't go far, flying is just too much hassle,

It was a beautiful day here in Spain on Friday, and a local holiday. We went to the garden centre, had a little walk, bought some food from a local shop then sat on our terrace to eat it. We considered that a very productive day, not what we used to do but still a win and we congratulated ourselves on it.

Ask your family to know your limits and celebrate with you when you can accomplish something.

From your other replies you seem to keep pretty busy, be proud of yourself.

Perhaps get you sons to read this site as it humbles me to see what others go through.

It is so hard to adjust to this after being active isn't it? But we have to keep going.

Above all, be kind to yourself,

xx

Golfer15 profile image
Golfer15 in reply to margaretpaloma

Thank you.

Paddysdad profile image
Paddysdad

Yes, I can relate to this although I tend to try and do things even though I feel so bad but of course that is a bad thing in the long run because it makes me feel worse.

But, my wife has noticed , I think, that I don’t really want to go on holiday. We ha ent been for three years and it’s difficult because I know I will be worse while we’re away. It’s always so difficult to know wether to give in or try pushing through and risking feeling worse later.

Golfer15 profile image
Golfer15 in reply to Paddysdad

Hi Paddysdad, I try to do quite a few things during the day, I've just been to the gym and have a couple of voluntary jobs. However, it does have a bad effect on me at times as you say. We have to know our limits. I know if I dont do anything during the day I will feel guilty.

David

Givemestrength65 profile image
Givemestrength65

Aaaahhh....spoken like a real gent! Your post echoes my life- except I am not so eloquent as you....I have learned to take each day as it comes- I work full time but do try and work from home at least twice a week. I was diagnosed two years ago- my job is stressful but I enjoy it- I know that in a few years from now I may not be able to work- mainly due to the brain fog and poor balance....I found this site by chance and have to say, it’s been a blessing! I don’t feel alone with this anymore...so welcome to the club!

Bondbug1987 profile image
Bondbug1987

I completely understand what you are saying,my family still treat me the same until I get in a crying rage and say I can't. They can see I'm in terrible pain just trying to walk they want the old me back just like I do or I'm sure you do. You want what you once had. My new found get away is smooth radio. I know deep down Im the lovely caring wife and mum they always had and still do look in the mirror each day and say hello beautiful as we all are. Tell them you are not being difficult or awkward its not you its your crippling condition and you want to do these things you simply can't.

You may also like...

How do people cope?

to things I can do to help myself with brain fog in company, lacking in energy when I have things to

How do you cope with the pain?

going out with friends,hobbies and i can barely walk some days. I'm 45 years old. How does...

How many people in your family have Fibro

many people have said Fibro is caused by some event in your life but i am not too sure about that....

How to cope with the extreme fatigue that come with Fibromyalgia?

any advice regarding this. Over the last week my energy levels have been so so low and i don't know...

how do people handle depression?

trips with family and many other things because I just dont feel up to it. I know things like this...