4.30 am again. Every morning now. Wake up feeling as ill as when i went to bed. Can't decide whether i am dying or just want to die. Tried everything, nothing works. Got another appnt with doc on Thursday don't know what i am going to say she listens but no drugs she has suggested have worked and side effects make things worse. Think she is at a loss. The horrendous head, neck, shoulder and back pain; stomach/liver and digestive issues with nausea; plus tingling, numbness, itching throughout body and vision problems with grittiness in eyes . Can't stop crying. Hubby also ill and his continual suggesting what to do drives me mad as his dementia means he is repeating things over and over and his continually questioning and asking me to do things is totally stressing me out. Have two daughters, but they both have their own problems to deal with so understanding and support it limited, so don't want to make a fragile situation any worse.
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ShelWhitt
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Or should l rephrase that? Doesn't sound so good for you. Just want you to know l totally understand where you're coming from.
I feel the same way. Like I'm on my way out. If that is the case l just wish it would speed up! Every Single Day is the same lately. I had a "virus"? 3 weeks ago, was sent to hospital with a raging headache and temperature. Had lumber puncture to rule out meningitis. Long story short came home with stomach bug and have not been right since. Prior to this l was just getting my stomach issues under control with the help of a ditetitian. Now the headaches are back big time! Had this problem 18 months ago. Took a year to break the cycle of daily migraines. No drugs do anything but make things worse.....like you, l cannot stop crying. Had about 2 hours sleep yesterday. Must admit had more last night through sheer exhaustion.
I do have a great partner but feel he's going to crack if this continues. It's just where to turn to? My doc is lovely but now at a loss as to what to try. I refuse to go down more drug routes, some of them frighten the hell out if me when it comes to side affects.
I am on a list to see a counselor.
Have you seen one? And is your doctor aware if your situation regarding your husband? You really sound like you should have some support.
I really do hope you have a better day. I'm sorry I'm not much help. But l do understand. X
I got some white cannabis oil from CBD brothers and slept like a baby! Ask them for a sample and see how u get on. It is not addictive x
Good morning ShelWhitt
I am new here and not too familiar with the website.
Sorry to hear you're having another early rise due to pain. I too waken early most mornings, hunched in pain. Diagnosed with FM 12 years ago.
I have never spoken to any forums or groups about living with Fibromyalgia and find it overwhelming to even begin to describe what I feel on a daily basis, but.. after reading your post this morning I just want firstly to send you a big hug.
So many similarities(all left side pain, and other parts of your posts I can't remember now)
Have 3 grown daughters etc although my HB doesn't have Dementia.
What a terrible time you're having, and I hope your local social services are helping you with some respite, due to your own condition. So much help out there regarding Dementia care and assistance ( my Mum had Vascular Dementia after a stroke 5 years ago) she passed away last January due to heart failure, she was 87 and an amazing woman.
Just wanted to say, I find having my own room and bed such a blessing. I moved into my youngest daughters room 3 years ago when she moved out, it makes such a difference not having to stay awake due to his snoring, sweats and body jumping all night.
It hasn't 'cured' any of my symptoms but my goodness having my own space has been so helpful, mentally. I made the room my safe wee haven and never looked back.
Wondered if this would help you to do the same?
been up since 4. am listened to the dawn chorus and watched the sun rise, pain through the roof today. brain not functioning but having my own space helps a lot!!!
I tend to put a false face on to everyone by smiling and saying nothing.., including my daughters and grand children.
I hope the rest of your day gets a bit better
just wanted to let you know you're not alone in thought. <3
Thanks for response. i relate to acting in front of children and grandchildren. Hubby says that is why they don't realise how ill i am. Think he has a point, but relating all our problems when they visit, wouldn't really help. They can't possibly understand and i don't really want to listen to more 'advice' when even docs can't help, so I tend to focus on them - it is after all what mother's do, Do usually feel slightly better as day wears on and then go down again at night. Unfortunately hubby wants me around all the time, his confidence is going, and says he'll worry more if I sleep in other bedroom in case I need him in the night Thanks for letting me rant, it does help to get things off my chest. Hope you all have as good a day. At least the sun is shining.
Totally agree with you about having your own room. I moved into my daughters room when she got married. Best thing I ever did. Now I just go and lie on my bed during the day and watch tv or read. No more listening to snoring at night and being shouted at for moving too much. I think we get along better now. I go I for a cuddle some mornings and that helps keep us close.
Definitely sleep better on my own.
I think you’ve just got too much to cope with right now—- you can’t be a carer when you could do with some care yourself. Is it at all possible your husband could have some respite care, just for a week or two ? I know it’s a difficult decision for you but if you looked on it as a holiday, it might just give you a rest for a while. I had awful digestion problems, had them for years until I took some probiotics. Bought Lindens , the highest mixture I could afford and they worked quickly. Every day for first couple of weeks and now only take one or two a week.
Some time to yourself might give you the calm time to work out things that help you, different types of heat, gels, sprays etc...
May I firstly commend you on not only surviving with this horrendous condition, but also caring for your husband who sounds very dependent. I actually don’t know how you manage it, and feel you need to congratulate yourself on coping, even though you’re at the end of your tether.
I agree with inchyra in as much as I have my own bedroom, and have done for four years now as the insomnia isn’t helped by husband snoring or moving and I also need the room to be cool so I can better control my body temperature which is all over the place.
I too put on an act for my children and grandchildren and my husband also says, as yours do, that they don’t realise how bad I feel due to this, but what good would it do? As you say, the doctors can’t do anything, and I don’t want my children to see the pain I am in, so I totally understand your perspective, but think this is a female perspective and down to the fact we are used to protecting our children and that also includes protecting them from the burden they would bear if they knew just how ill we felt.
I do hope social services are involved because you cannot possibly be expected to care for your husband without respite ( even people without this condition get respite) If they are not involved I would contact Age Concern or some other relevant organisation and ask for a home visit and assessment, or your local careers centre if you have one.
Anyway, I am sorry I can’t help you any further, but maybe you can compromise and have a couple of nights in a different bedroom and assure your husband you’ll call for him if need be?
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Really feeling down!
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