Struggling

[LozzieC]

I think the title says it all really. I work full time and whilst it’s tiring and can be painful it’s ok. It’s the rest of life.. I don’t really have one... no idea what to do... feel so useless!

[JustDomUK]

Hey

I’m the same. I am struggling and working full time. Weekends are spent mainly in bed, recovering from the week.

I ring people, there’s an older lady who is sick from my church and I ring her weekly. We share our health problems and this helps us both enormously.

Dom

[LozzieC in reply to JustDomUK]

Other half doesn’t really understand and moans I spend a lot of time in bed. I’m doing my best to be normal but if I push myself too much I crash and burn as you probably can imagine! X

[2Sleeping]

I work part time used work full time the pain has increased that bad almost passed out I love my job it's so hard to give it up so I keep trying my sickness records threw the roof but my bosses are understanding now what it is not many boss understands what it is lately my partner thinks I am turning in to a grumpy person I find it effects everythink but I keep plodding on I am a fighter

[Mark8]

Your not useless that the first thing you got to put right your just on a low everything seems against you at the min and turning this all around will not be easy but it is possible your never going to be ho you was and be able to do some of the things you did do but there nothing to say that you can become happy once more in life and to me that the most Inportant I not got all the answears I would love to have just wanted to wish you the best of luck and let you no your not alone and don't give up postivey the way forward x

[LozzieC in reply to Mark8]

Thanks Mark I have had this for 12 years but just lately is the first time it’s started to affect my marriage doesn’t help with the asthma on top which has got worse lately!!

[Midori]

Hi Lozzie,

Sounds like its time to tell the OH that if he wants his wife back, she has to reduce her working hours. I think you are doing too much and ignoring your spoons. Does your hubby know the Spoon theory? Google it and print it out, if you can.

As regards to work, has your employer made any adjustments for you? You are entitled to ask for reasonable adjustments to your work environment in order to stay in the work force. This depends on the type of job, of course. Consult any Union you might have, also talk to your manager and HR. They can send you to Occupational Health. They cannot just sack you, there are legal hoops to jump through, but don't be tempted to resign, no matter how much pressure you may be put under, as it will stop you claiming the Unemployment part of UC, Remember that if you are on PIP you are protected by the Equalities Act.

It will take a while, It would help if your Hubby was on board. I hope you can get things sorted.

Cheers, Midori

[LozzieC in reply to Midori]

Hi Midori thanks for your reply I love my job and wouldn’t want to reduce my hours I tried being a ‘housewife’ I ended up with counselling because my depression got so bad so not going there again! Lol I think it’s hard for a non sufferer to fully understand that sometimes just the slightest touch is irritating (in a painful way). He does know I just think he forgets very easily lol (his memory is worse than mine!)

My employer is amazing and supports me fully. I’m waiting on an occupational health assessment and bar a desk assessment for a new chair I really don’t think there is much more than can do!

I’m just going through a rough patch and with no friends I’m pretty lonely I suppose! Xx

[Julesubu in reply to LozzieC]

I have a fabulous boss it depends on your type of job, is it something you can do at home for a few hours? I go in until about 1 then can do admin at home in bed as only place not in pain. If fatigued I can take nap and work after. Get really bad migraines so can swap my days rather than being off sick. Not all jobs are suitable for this. I worked 40 hr week until 5 years ago but like you had no life out of work. You have to have balance, so I now do 23 hrs and so glad as my fibro and arthritis have all got much worse.

It is hard for partners to understand as pain is invisible and fatigue cant be described.

Hope you find a way to work through things.

[LozzieC in reply to Julesubu]

I occasionally work at home but it’s better to be in the office and that is how I remain social too. Since we moved to derby area from London (to be closer to his family) all we mainly do is see his family! All my friends were in London and obviously there is lots more to do in London than round here so we were everywhere.

[Midori]

I was thinking mainly of life beyond home, It is a Problem when you come home so exhausted that all there is left is bed. That isn't living; its existing to work.

It is good your employer is on board and is willing to help, but reducing your hours will not park you as a 'housewife', been there, done that, myself; I was a nurse, and I had no choice in the matter. I literally could not continue to work.

Housework is endlessly patient; it will wait.

What I an concerned about is Life for you and your husband. If you are sleeping much of the time you are at home, then something in your Work/Life balance needs to be sorted out, especially if Hubby is having a tough time understanding why you are so exhausted. I wouldn't like for him to become depressed and look outside for interest.

Is there a hobby, or pastime you could do together? It doesn't matter if its just going out for a coffee regularly, or a visit to a pub, a meal out, or a trip to the countryside, Everyone needs to get out from between 4 walls.

We Fibromites can often make a prison for ourselves and isolate ourselves from friends, etc. I get out weekly to a Chatty Cafe, which helps you make new friends, there is also a Crochet group I attend, which has the same purpose. I am hoping to volunteer at a local museum, for a few hours a week.

[LozzieC in reply to Midori]

We used to go to the gym together but he does with a friend now. We are out and about every weekend but he doesn’t seem to understand I don’t make plans for every weekend and we don’t have to do something all the time! Sometimes it’s nice being at home getting jobs done round the house lol

[LozzieC]

Oh we are out every weekend lol and I only occasionally get a nap In the afternoon if I’m really bad. Hubby goes to the gym every evening with a friend and I spend that time in bed winding down before sleep but apparently that’s always being in bed?! He isn’t even around.

[Jackiejack123]

Honestly hun I could not work at all my hubby works n keeps me , although I have all my life n paid my taxes I could not imagine going out to work now , no one pays our rent except my hubby

It does my head in I cannot get any benefit what so ever x

[Julia10]

Hi. When I broached the work subject with my consultant Rheumatologist as I was struggling he told me that everyone with fibro is different but the one thing that is the same, is that, eventually we all have to change our working life, keep going as long as you can within reason. There has to be a balance. Take care 👋

[Kitten-whiskers]

So sorry to read this Lozzie, your certainly not useless, your doing tremendously well to work full time as it is - and for that you should feel proud. People who do not suffer with fibro do not fully understand the daily batltes we undertake just to get through the day.

Its really important to listen to your body, so if you need to rest, then rest you should - only you know how you really feel and I am sure anyone feeling worn out/in pain like you are would be resting as well

Your doing well xx

[Usandthem]

I also work full time and find it unbearable at times. Come home go to bed and weekends are a washout! I do have the occasional good weekend and I see friends and family but not as often as I would like. You are not useless, you are holding down a full time job and it is hard work! Keep talking to us, we all feel the same and it's good to know you are not alone with what you're feeling🤗 just remember you are a fibro warrior and you will kick it in the ass🥊even if you only have one weekend in 6 months spend it with people you love they wont judge you 💕hope you feel more positive when you read all the replies you are not alone and you are worth so much more than you think! Keep chatting fellow fibro warrior sending you love and peace💕✌stay strong 🌈