My hands. Had op. carpal tunnel right hand in december. RA, pain and swelling preventing usage. pressure from dr to do the op. left hand. waiting apptment rhuematologist about RA flare. mobility deteriorating fast.
My brain. I was always so organised. excellent memory. my finances are all over the place. Driving up the road on my scooter, woman stopped me, talked and obviously knew me very well. (couple of days ago). I still have no idea who she was!
These are just examples. What frightens me is, at what stage do I tell someone I cant look after myself. I desperately need to stay in my home, keep my independence. I dont think I could bare to lose everything. Every day is intolerable pain despite increase in meds. my life feels just chaotic, wildly out of control. Scared.
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tulips123
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I live in a local council adapted bungalow. I am dreading the thought of having on a permanent basis people coming in to wash me etc. Have had them before but for short periods, after hospital discharge. Lovely people. I'm a private person. I realise how petty and ungrateful this must sound. I hate it. All of it.
I'm uncomfortable with attending to things under someone else's timetable. I rest when I want to, shower and so on when I feel like it. I can sleep for days at a time. My home is my space, I feel violated. My memory is causing so many problems. Everyday now, I come across things like where I have made arrangements with people,,and finances and bills I thought were paid, bought things, and I just cant remember any of it. Direct debits are just causing more problems because when I muck up, the bank are getting quite annoyed. Where am I when this is happening? I do keep a diary and have a wipe clean board in the kitchen. I look at the things I've written, often doesn't make any sense to me. Where do I go from here?
Please forgive me. I know how ungrateful this is. Lovely family, friends, gp. etc. Which is more than many people have. I am so scared. None of them can help me or change anything.
...I can't take your pain away but I can send you a big soft fluffy hug .....
Sandra's right, your now alone....Hug for you too Sandra x
I so feel for you and know exactly how you feel. Sit down on a good day and write lists of things to do that you can tick off pace yourself and rest inbetween jobs. Ask for help at any stage that you feel you need it, it is out there and you will not have to leave your home . I have help with shopping and house work and also someone to come out with me if i need it . I was a very independant woman with a good job a house and lived life to the full now it is such a different story. You will grieve for your old life that is natural yet you can make a new one with new interests and goals. i have taken up new hobbies and joined clubs to meet people. I use direct debits in my bank now to pay everything so i know it will automatically be paid without worry . I use online banking so i can sit at home in my own time and look at my finances . I use alarm clocks for taking meds on time and have them blister packed now so i know exactly what i am taking at what time , this makes sure you are getting your meds on time your chemist can help with this .
I do hope this helps and please do not hesitate to contact me there is so much you can do to keep as independant as possible but it is one step at a time . Give yourself time for adjustment , make sure your family and friends know exactly what is happening in your life they can help too.
I had/have a history of rotten health from a child as you Tulip123. Reading through your ailments and your profile, I would say one thing to you, get your thyroid tested, re-tested, and don't accept "normal". Post your results on the thyroid site, which I am also on. The thyroid or in my case lack of thyroid (thyroid cancer and removal 2003) has caused me all my problems in my life (physical and mental). I urge you to look at this, you might just find getting your thyroid sorted you can drop some medications and feel so much better in yourself and lose the fear and worry of not being able to cope.
Yes my thyroid went haywire after birth of my youngest (she's now 24). Regular testing, levothyroxine increased recently to 250mcg. Initially felt a boost and if that was the only problem probably would feel on top of the world. Malfunctioning thyroids are the pits though aren't they! Thank you.
Sandra has answered this perfectly re help and the others have asdded their support not much more I can add except to say I am thinking of you and please please apply for help through your rheummy or GP...
I cant blossom. I love my family, and I know they love me. It's not about trust. My role in life has beeen the carer. My head knows, my heart disagrees. I feel so humiliated, incompetent, useless, nuisance. When people are here, I make jokes about myself, cant hold a conversation or do anything of any practical use, that's so funny ha ha ha. It really hurts. I can only cry when I'm on my own. Everyone always says how well I cope, I'm great fun to be around you know. Anyone got a problem? Come and see me. Crisis? Tulip will know what to do. On top of which, my eldest daughter has gone to Ibiza for work, there is nothing here for her, and my youngest + her partner, 5 year old and 7 months old are facing homelessness. My best friend is in the middle of some horrendous family problems. I cannot think of a worse time to hold up my hands and submit, even if I wanted to. Which I dont. I cant do that it's not fair on them.
Believe it or not, everytime I offload on here, and you lovely people respond with suggestions, kindness and real understanding, it acts like a pressure cooker, gives me some relief for a while. For which I thank you from the bottom of my heart. I'm exhausted again. xx
Oh Tulips, you are so not alone. No working hands, legs, or feet. Fingers like sausage claws. My family, bless em all, seem not to have noticed. Are lovely and sweet but totally in denial. Am selling things on e bay and saving the pennies ( ditched the hairdo like someone else I was reading about) to go for a week to a sort of posh rest home come hotel where, according to the literature, the staff will listen to you and help you and just treat you as you are, not as they want you to be.. Won't be going for a few months yet, but oh am I dreaming about it. Hang in there, and don't forget to have a good scream every now and then. xx aberc
sound like a girl after my own heart! a really good idea though, escape for a whole week, luxury and care just for you and only you, and zero reasons for any guilt trips! my idea of heaven. every penny you can save up, is a penny closer, something to work towards.
Never be afraid , or to proud to ask for help, I've been a carer almost all of my working life working with people of varying degrees of disabilities, I always consider myself good at my job but I don't know how I would feel on the receiving side, just remember that people are there to support you not to take over your life, make your preferred way of doing things known, as we would hopefully work with you, helping to maintain your lifestyle, I myself have osteo arthritis in my knees, hips, back, hands and neck, I have recently been diagnosed with fibromyalgia, I am one of the "lucky " ones who still manage to go to work, because where I work is specially adapted for people with disabilities, I'm not giving in to it, carry on fighting luv n hugs xx
I totally understand where you are coming from. I used to have periods of time when I almost felt normal. However over the past year or so I have begun to realize that those 'good times' aren't happening any more, and I have deteriorated to the point that I daren't think about what is to come as it fills me with dread.
I have lost all ability to remember and have to make copious notes on my phone calendar and set alerts. I cant undo my own bra, I drop things all the time and totally loose the tread of conversations mid flow. the pain is so extreme that I have taken to using a walking frame when out shopping or hiring an electric wheelchair.
It is frightening to think you can have all these problems and still be thought to be imagining it all.
I, too, am an extremely private person and understand how you feel.
when I have help with my shower, I wear my swimsuit. this helps me feel less vulnerable and I can relax. {I have privacy for my bits} and I feel refreshed and clean
when I mentioned having help to family, I explained that if someone comes in and "does" for me, they are doing things I struggle with - or can no longer do. this means that whatever energy I might have is for me!
you're not being ungrateful, it's a big step. It took me quite a time to accept that far from it being "giving in" to fibro to "have to have help", accepting assistance is showing fibro that I have control -
Wen I asked my doctor about oxycodone he said my god no that's for cancer patients he's such an asehole needs to read up on fibro n educate his dumb ase rant over lol x
Tell him about the book Fibromyalgia for Dummies and/or send him some website addresses.
Can you get a second opinion from a doctor at your surgery or get transferred? Talk to the receptionist - they are usually very helpful. If you don't want to do it face to face, ring them.
My daughter and I struggle with depression and you do sound the same as I think when I am depressed. You have every right to be. This is all not fair and foisted on you by life. Give yourself a chance my dear. Maybe avoid trying to do too much at once? I am lucky but determined not to be a victim of FM, but a survivor. Easier to say than do sometimes.
My hands still work, though they hurt a lot at times. I dread them seizing up. When I am depressed, along with FM my life seems too much and I cannot think straight. My eyesight is not so good either, but my main problem area is back, hips and knees. I went to the Mobility Scheme and have a mobility scooter on hire for 3 years paid for by the DLA Mobility section. How I craved independance before I had it.
You should be on Higher DLA and getting support, are you? You have had good advice. You tell them what you need, they do not tell you. They can come and have a cup of tea, wash up for you and do your shopping - or wash you, but you could talk to them and say, not today. Good idea about the swim suit. No idea how you would get it on, but if you could go to a Mobilty Centre they have loads of aids that you can get without VAT. Maybe get one of your family to take you? Have a good look. I got a sock puller on thingy - for the days my hands don't work, a grabber thingy for when my back won't let me get things - but may be a problem for your hands? There are also things to help you grip cutlery, taps, etc.
When you get your money sorted, arrange your Direct Debits to be in the week money comes in or the week after so you can see whats left on line. If you are not computer savvy enough to cope, ask a young member of your family to do it with you. Maybe use family birthdays/names as passwords? Ones you can remember - or have a birthday book to keep note of these!
Little steps. One at a time.
Keep coming back here for support. Don't give up or give in. Take control of your life, make some decisions, get some help where you want it and how you want it. Get your meds checked too as some can cause depression and confusion.
I wish I could help you better. Keep your chin up and survive. ;o)
You're very kind, thank you. I do have full benefits, and a motability scooter. When I first had I was over the moon. Sense of freedom. I dont feel safe on it @ the moment, hand control a bit unpredictable and I struggle to move my head to check behind me etc. concentration very poor. I've had a couple of scary moments. Also have many aids, but still struggling. I think I'm going to have to bite the bullet and get some help. Without making too much of a point, I smell. Just want to hide in a corner. Feel so humiliated. The people on this site help so much. Kindness and understanding have stopped me going over the edge. Very tired again.
I would love a scooter just so I could go to local shop or post office but I was changed from high mobility to low last time even though I can hardly walk and it causes severe pain I have nearly passed out so many times the last time I went to local shop it took me 2 hrs lol its only a 5 min walk for most people im trapped until my support worker visits on a Tuesday but she is only here for 3hrs max annoying since im allowed up to 6hrs a week !! and I have to pay £25 a week for the privalige.
it doesn't make any sense does it? best of luck with the support worker - £25 for 3 hours a week? no wonder there is no money to support sick/disabled, it's all going to private enterprise!! I'm sure it makes sense to some people. Just not us,
I have that book its very good as it goes.Im so sorry your finding it very hard at the moment .I am sending you a virtual hug .Please try not to panic ,life is hard for us but there will come a day when you feel able to cope better .I have had it over 40years and the only way I cope is with God by my side .Have you talked to your doctor about being depressed cause monster of us are at some point and I have to say I felt a lot better when I was on them ,but they made my already sore mouth unbearable .Take heart sweet sufferer .xx
I am a christian, but sometimes God seems a long way away. The life I've had, I am convinced there is a reason I'm still here. It is clear to me that my adult daughters actually need me more now than they ever have. I owe them that. There is no-one else who can provide them with the emotional support that only a mother can give. I am so worn out, with things that are too heavy to hold, and there are times when the temptation to let go is so strong. But I also know that things will ease again. During the worse times, I cannot pray for myself 'cause my anger gets in the way, but I can pray for them, and I suspect God uses that to keep me in tune. Anyway, it works. I dont necessarily have to understand, Just to accept. It would comfort me if you were to include them (Sophie & Fiona) in your prayers, for God to keep them safe, and lead them in the right direction.
Hey sweetie ,then I will stand in the gap and pray for that I can do .I have had this awful illness for over 40 years had three children ,I started with it when I was 12 years ,had a very traumatic childhood and docs think that's why I started so early .I am a born again Christian and one day when the pain got too much I screamed to God and I asked him to heal me as I wanted to die .He healed me alright not in the way I wanted ,but he healed my mind to cope ,he also has put many people who are suffering chronic pain and I know that through Him I helped many people .Just by listening and saying I understand what pain is because a lot of times they can't talk to families or maybe they have no one .Please know this time will pass and things will seem lighter. Myself I'm in a really bad flare up for a few weeks now ,but I know this will pass .I will pray for your girls along with mine and my son .Where do you live tulip ?May God and bless you through this time ,may He make his face to shine on you God bless xx
your history sounds very much like my own. horrendous, abusive childhood, and my probs. started showing in my physical health when i was 12, i lost my hair. now i'm 51, and have many auto-immune disorders, as well as the fibro. when i read the posts on this site, so many have a history of trauma/abuse in childhood. the body responds to the pain in the soul, and that is why i think we can really understand and support each other. we know because we've been there.
Sounds very similar ,I have so many auto immune things. Thyroid ,leaky gut,IBS ,trigeminal neuralgia ,lichen planus lost hair and so much more .Im ok now have deaLt with issues well mostly still have problems with rejection but I try to deal with it when it arises .I have forgiven the people who hurt me and moved on as much s I can anyways .Im 61 now and blessed with a wonderful marriage to a man who really understands and is wonderfully supportive ,I know many fibros don't have that so I'm blessed indeed .Take care if you need to talk just email me xx
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Just not losing weight
Losing all feeling in my hands
I'm new to this damned illness!!
College warning me of losing my place :(
Losing friends
