Just wondering how many people who have Fibromyalgia are also carers?
I am a carer for my adult son (27) along with my Hubby who has Autism (severe), Learning Disabilities and Behavioral Problems.
How do you cope? I am finding it very difficult at the moment as I am in a lot of pain, chronic fatigue, and feel very depressed.
Caz. Xx
I am a longtime carer for my son. I have severe fibromyalgia and chronic fatigue
I am full time carer to my dear husband he had a stroke several years ago. I don't need it however there is help available but you have to ask, you could start with your GP. x
Yes I suppose in a way I am as my husband has anxiety and depression so he helps me with more physical things like the heavy housework and I support him mentally. I always say we don' spoil another couple as we scarecely make a good one between us.
Mind you on the positive side in someways helping someone else takes ones mind off oneself but sometimes when my own brain is full of fibro fog and he is having a bad day mentally I find thinking for two of us difficult. x
I am also a carer, my wife has Primary Progressive MS, and I have a sister with Downs Syndrome who I am legally responsible for.
I am carer to my daughter who has learning difficulties and mental health. I also cared for my father-in law, but he passed away at Christmas. Take it one day at a time. Try to make a special 15 minutes each day just for you - mine was coffee with powdered milk at 3.00 pm.
Thank you all for your replies.
It never used to bother me. However now I am not the woman I used to be -single mother to 2 boys, (until I meet my hubby 12yrs ago) worked part-time, helped out at a few charities. Now I can barely get out of bed.
Lou60.
Have had carers assessment. Was a waste of time, told me what I was entitled to then they tell you no money. Respite care disappeared 6+yrs ago, shut it for refurbishment and never reopened. Nearest one is now over 80 miles away.
Hope you all have a reasonably good day. Xx
As a retired RNLD who spent years taking care of people with autism, I can understand how awfully hard it must be for you! You love your son and want what's best for him obviously but you also need rest. Have you got a community disability nursing team in your town who can look into respite care for him? I hope you can find the help you so need. X
ahhh..... you poor girl x just all too much for you but as mothers we always push ourselves too hard x
I also am a full time carer for my Son with learning difficulties, care for my elderly mum & dad and also my long term mentally disabled brother, And just to throw into the mix I have Ostio-arthritis and Fibromyalgia.......... Its a 24/7 role but its important to try and have some "ME" time too, I try to go outdoors...A light snack in a Cafe afterwards....Or if I have a good day health wise a short swimming session or sauna.
Its important to try and have some time out for yourself.....Caring is both mentally and physically draining.........But we do this without question for our loved ones..xx
Thank you all. Will definitely try and get some me time. Must phone my friends and arrange some coffee dates.
Hubby has bought a Lazy Be inflatable hot tub. It is going in summer house we have in garden. He says it will do me some good.
Time I started to think of me for once otherwise I will be no good to anyone.
Thanks again. Its a great site. Shows I'm not alone.
I was a carer for my husband for 4 years before he died and had fibromyalgia, depression was the worst for me after the pain, the only relief I could get was an afternoon nap, and pottering around in the garden, felt very isolated. you need to keep in touch with as many friends and family as you can for their support, and immerse yourself into a hobby.
I am a carer. My daughter has down syndrome and multiple other medical problems.
I have been full time carer to my husband for years, causing me to have a lot of stress and not very good sleep patterns, as, when he is awake, i am awake with him. I actually believe that this has been a major factor in me developing fybromyalgia. It has crept up on me over the last few years, I've felt increasingly down, low and extremely tired. For years ive been backwards and forwards to the doctors, getting blood tests and then being treated for depression, under active thyroid, anaemia etc, without ever feeling any better from the treatment. I also have 2 prolapse discs in my lower spine, that cause extreme pain on doing anything active, including just standing or walking. i recently saw a rheumatologist who took 5 mins to talk to me and examine me before handing me a leaflet and saying that i have fybromyalgia, and to come back in 6 to 8 months. I went back to my GP and told her how little help he had been, so she sent me to a pain management clinic. I was sceptical as I've been to one before for the same back pain, however, he was great. He really listened to everything i had to say, and booked me in for a medial branch block, (spinal injection). I thought that if I could get my back pain sorted that the fybromyalgia would be easier to cope with. Unfortunately the procedure didn't work and I'm now left in the same amount of pain as before, untill i see him again, in 3 months. I am feeling so low lately because I really thought I was finally getting somewhere, but instead, my pain is worse, my mood is very low, I'm always exhausted, i have no energy or inclination to do anything at all and I haven't slept more than 3 hours per night for months. I feel like I'm back at square one and that I'm just going to feel like this for the rest of my life. If you can call it a life, that is. Life is what happens while i wait for appointments and treatments, it still goes on while I am in limbo, desperately hoping for something to change, soon. My grandkids are growing so fast and I'm not able to enjoy them as i should. My life is a daily battle with pain and exhaustion, it takes 3 days to get over doing the weekly shopping, most days I feel like I've been hit by a truck, and i can't see a way out of it. I'm very active, i have no choice, i have to take care of my husband's needs, i just wonder, who is there for me, who will help me on the days i don't feel like getting out of bed, or when my body aches so much that it hurts to just stand up? Where will i find the strength to fight this horrible condition, and when am I going to get my life back? Oh and just to make sure I'm really suffering, my husband's change from DLA to PIP, has resulted in them taking away his mobility vehicle, which was my absolute life line, and the only way I could cope with errands, shopping or getting him to appointments, so thank you to the government for that. That really was the icing on the cake. Or was it the last nail in my coffin!!!
Hi, I also am a carer, but have to deal with Fibro. On top of that I was also recently diagnosed with ASD. How do I cope? Today, I am in crash mode, so I have to rest while my hubby is in bed. But as soon as he is up; I focus on him, then rest in between. It means ordering take away when I cannot cook. It means lying on the sofa watchin tv and leaving the house work. I catch up when I feel a bit better. I hope you manage to rest when your child is at school. And if the house gets messy, leave it and focus on getting the rest you need. I hope this helps. God bless
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