It all started way back in Nov with an eye problem that led to a permanent headache over one eye. Optician put me forward for hosp. referral but nothing heard since...Then there was a tiny opportunity for Christmas socialisation b4 the 25th and that's when I obv caught the dreaded virus which has led to pneumonia!!!
It's bn really rough so far but symptoms have eased apart from gross weakness. I do understand having bn immobile for so long with fibro is a recipe for disaster???
I am so weak I just cannot get dressed! I try but then with all the layers of tucking in etc I just feel so nauseous and collapse so now I don't bother...
I'm so very cold and I don't hv the wherewithal to prepare food apart from toast. I really do feel hopeless!!!
I haven't seen anyone for months.
I only have a few faraway friends who really don't seem to care abt me getting so ill this time...
I haven't seen anyone in weeks now!
I've tried doing puzzles and watch wall2wall TV but all I do is think! And the thinking isn't helpful...
I know fibro has caused such a lot of losses but realising I can't cut my toenails anymore, I don't bother wearing any make up, my hair is overgrown, my nightwear and slippers are the only items I need replacing because I wear them so much to keep warm and I used to be so keen on my appearance to look smart&well kempt...
It's a v slippery slope and I feel aftr trying so hard to adapt with fibro that I've lost all that acceptance too...
I feel very sorry for myself and with no friendships at all I feel that I'm too awful to know...
I used to be so sociable and popular once but then when I got 'waylaid' by fibro I know I had to change so much. No more walking of any distance, cutting out morning appts cos I always felt so rough, preferring not to go out late, gave up alcohol and I suppose the invitations slipped away too???
When well, I have links with 2 voluntary jobs and 2 monthly societies and I do try but making friends at this stage of incapacity seems impossible...
I have a miniscule family who I only see once or twice a year and even then they're not interested. They know I'm ill but haven't enquired...
I seem to hv more in common with the elderly than any folk my own age???
I'm young at heart but the reality of not being able to stretch and reach my feet for toe-nail cutting seems to hv taken me to an all time low whilst I wait for recovery &/or Spring warmth...
Not really sure why I've disclosed so much here except that I feel so very lonely...
My fibro symptoms with so much resting aftr virus are pretty light until I try and do something!!! I only wash up twice a week but that's agony so I'm v fortunate to have a cleaner sometimes...
It's a very isolating world we live in????
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Wobblygirl
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So sorry you have been so ill Wobblygirl. Pneumonia is a serious illness and as you know it causes exhaustion so I'm not surprised how weak you are feeling. It seems to us when recovery is slow that you will always be like this and you can't see the end of it.
Being socially isolated because of the illness adds to your suffering and sense of abandonment. But you won't always be this sick. I can see better things to come for you when you can't see it yourself. Having pneumonia on top of fibro - well I can't imagine it. I guess it's the straw that broke the camels back, so to speak.
I will hope and believe good things for you until you can hope and believe for yourself. Until then, just hold on. Just take it one step at a time, one moment at a time. You will smile and laugh again, and you will go to your volunteering and societies again.
Hi WobblygirlSo sorry to hear you are having a difficult time. FM can be so isolating and other health issues can bring us down.
I have over the years bounced back ( well nearly) from 2 serious virus on top of FM. It is so exhausting , I can remember how hard it was to have a bath or get dressed.
You have no energy to live your life or enjoy things day to day.
Remember you are still you with lots to offer.
Sending gentle hugs you will grow in strength soon and find connections with people. MIND have online groups.
Could a mobile pedicure be possible at home to get you started again.
Good food,sleep and leaving draining negative relationships behind helped me,day by day,little steps.
When I was so very poorly I could not imagine how things could get better but they have.
I have replied to you Gigiruth below but not in the right order! I seem to have replied in the wrong order so not sure if everyone will feel appreciated for their time+understanding.Do hope you find my message?
Hi there, from what I hear getting over Pnenmonia and also Fibro will knock you side ways , I am always very sad when I read that people have lost friends/family and don’t check in too see how people are in themselves🙁 I think if the shoe was on the other foot they would really feel what it’s like, this forum reminds me constantly how hard it can be and why I do chat as we seem too be in a very big unwanted club ☹️. It’s okay too let your feelings out here, we do need too do this , yes Wintertime not the best time of year and can keep us at home a lot. Yes thank goodness for the TV , local radio, newspapers ,i do I,erase myself at night with some favourite programmes I record and lose myself completely, my current faves are Call the Midwife, Granchester(Cheeky Robson Green ) &any good dramas I can look at , my friend tells me Vera is good ,so I recorded that last night. Is your doctors surgery able too send a nurse in too help with your toe nails, I know there are district nurses too go out in the Community for home visits. xx
Thank you so much for understanding...You've obviously been thru same viral attack in yr past and recognise the dilemmas of dressing&bathing???
I still only put layers on top of my nightwear and the bathing doesn't happen too often because it's the one activity of a day! Then a collapse! Not every day as it really takes it out of me...
I shall try+focus more on nutrition...
And the mobile pedicure is definitely something to look up...
Thank you again for yr helpful suggestions but I'm sorry it's been thru personal experiences!
It's lovely to feel less alone by the two responses here...wish you both lived locally
I had pneumonia in November, I already have a lung disease along with my fibromyalgia and a myriad of other illnesses. It absolutely knocked me for six , we had to get paramedics out twice, I’m still not over it. The exhaustion it has left me with is another level to any exhaustion I’ve felt before. It is difficult to dress, shower etc and I also spend most of my days in pyjamas or lounge clothes. I’m lucky that I have a great support system, I can’t imagine how isolating it must’ve been for you being alone. This place is great for support and advice from people in a similar situations even if it’s to just say I see you and validate you.
Good luck tomorrow, I hope it goes well. I found myself in a hopeless place mentally a few years ago after I had to stop working. Work was also my social life and my family aren’t close, but they were always only a phone call away. I spoke to my doctor and started on antidepressants and had counselling, it’s not for everyone but it made a huge difference to myself and pulled me out of the dark hole I was in. I hope you start feeling a little better, baby steps but you’ll get there. 😊
Many of us are constantly in pain struggling , you are not on your own , ring your doctors and ask for help , it's out there I think .You may get someone coming in to help .
I'm sorry you have felt so lonely and unwell, If your friends and family are not making an effort to see you,Are they worthy of you? I don't think they deserve you,
I can't speak to people because of anxieties, Daft really but I cope if my Hubby speaks for me thank goodness, I tried to go down the street on my own last week,
It did not go well, I'm so very grateful he's around and we are so close, He is my gem, Hospital,Dentist and doctors are all very good and don't ask to speak with me anymore,
We have 6 children (adults)between us and only my Hubs 2 are in touch, The younger got married last year, We were too ill to attend and they live in London, They filmed the day and sent it to us, She is a very busy and popular hair dresser for Toni and guy,She travels to Australia every 2 years for 6 months a time, where she trains hairdressers and gets to stay with her friend,
She said we could go and stay for a month at a time with her, I have a deep phobia of so many things that want to kill you, So have to say no, She calls every month
The oldest is a Director for a certain Tyre suppliers, He travels to florida and barbados to see clients and is out of the country for a long time, But still tries to call once a week and has got engaged to his lovely girlfriend,
The others? There are not enough hrs in the day,
I was never invited to any weddings, Special birthday ie 18th, 21st weddings, Found out that I am a grandma to 8 babies,
All because I divorced their ffhcrfhih Father, he brainwashed them with a new mum and a lot of money and threats they would have to lose all contact from friends and family, I was too tired to argue, I have had no contact with them since 2010,
I live NW they live OX,
I am 51, Married to my wonderful Hubby since 2005,We have 2yorkshire terriers and (18 yrs old cat) There are many more things but time is running out, So there you have it, you have a load of my life before you (and others now)
I'm never lonely whilst I have my animals and Hubs, But I prefer to be alone, It's a good thing for me
Hi I can sympathise with what you say about family mine has abandoned me simply because I was too ill to attend my sisters wedding my partner had covid he was in South Yorkshire as he did not live with me then I was ill with a virus and had severe tremors I spent a fortune on a new wedding outfit shoes hat etc for the wedding only to be called names because my sister said the food had cost her a lot of money at the hotel I quickly pay palled her the money back she got a lovely wedding present from me and a wad of money she never asked how I was or even sent me a photo or a piece of cake and it’s been several years now she has never made contact with me since and she lives locally. I keep contact with my nephew her son , when I wished him a happy birthday on face book she emojis me laughing at me. My nephew told me to ignore her and move on, it’s difficult for him as she is his mother. My partner has told me not to bother with her as she is not worthy of a kind and caring sister like me. She has never been there for me and only cares about how much money she has. I have many health issues which hinder my life I’m lucky my partner is understanding but sometimes I feel very down and lonely because I cannot do what I would like to do the pain can be so dreadful and my chronic asthma slows me down as well as my faulty Heart circuit. No one seems to understand when I’m feeling so tired because they’re not inside this broken body . So you have to be strong and hope that tomorrow brings a better day. Sending hugs x
Hugs for you too...Your family situation sounds so very very painful. Yr sister seems not v nice at all but the laughing emoji just seems 2b so cruel!!!
How hard for yr nephew too?
Listen to yr partner and try to look beyond all this... It's not easy in any way! I should know, I had to leave my sister behind 30yrs ago as she was so nasty to my parents and then abt them so I turned to occasional e-mails only; never a phone call&I just interact abt the weather!!! I hv a useless brother too!
My parents would b mortified 2 know how their 3 children had turned out?
Here's another little chapter of my life that's made me stronger but a bit messed up,
My lovely Daddy, worked his butt off to put food in our tums and shethatmustnot benamed concentrated on spending it, Royal Green Jackets 3rd battalion,
We didn't see our Daddy for 3 years at 1 stage, I learnt after Dad just wanted to see us and she would say no, She left us on our own a lot and said she had to go out and if she heard us, we were in deep trouble and to stay out of the kitchen,Sometimes she'd go to the neighbours or she didn't come home at all when she'd stay over at her boyfriends!
My oldest brother thought it funny to show the 2 other brothers what to do for sex,I was 8,he was 15, At every chance he would do this and I wasn't really sure what was happening at first! On the way to school one morning I asked her about it she said not to tell anyone, I didn't go to school that day instead I got quite a beating for the lies i was telling and god knew everything ,so in turn, she knew and I needed time to think about it, I had big welts on the back of my legs that I couldn't sit down properly, The school were told I was very sick and was off for 2 weeks,
Disgusted behaviour from me because I just kept telling these awful lies that they would make everyone I loved , not want me any more! Visiting my Gran parents one day, She was talking to my Nana, I was helping clean out and feed the rabbits with my Paps( I didn't know we were plumping them up at the time) Paps said I was too quiet and I cried and told him what was going on, His veins were pumping on his neck, He gave me the biggest of hugs, He said he would sort things,
I found out Paps had called Daddy, ( sorry I'm 51 and still call him Daddy) The following week end he called round out of the blue, (to the shock of her) The brother who did these things was running a bath and Daddy bashed the door in and held his head under the water, I stopped him,
I didn't want Daddy going to jail, The next day he drove me to Wales and I stayed with my Uncle Ray and Auntie Carol until I was 14, I had the best time, Never went hungry or left alone, Got loads of hugs and made to feel like part of the family,
All I ever wanted was love,
Here endeth a chapter out of my head , This is not meant to cause anyone any discomfort,just another chapter
So glad you have a supportive relationship with yr second husband and his 2children try to keep in contact too...Must feel like a warm comfort blanket?
He is my 3rd Husband, The other two were just to let me know, there is love out there and sometimes It's been there all along just waiting, We were both in the right place at the right time
I'm sorry you feel so alone in all this. I have no family, and have just a couple of good friends, one of whom has severe Fibromyalgia too. Thankfully, I do have a loving, supportive husband. Pneumonia is debilitating, I've had it too, it really knocks you sideways. Regarding the Hospital appointment, find out who you have been referred to and call the secretary of the Consultant and ask for things to move along. I have been told at a couple of appointments, that since covid, NHS staff rely on patients to chase appointments up!
Have you asked to be put on a list for a pain clinic? You may not make friends there but can talk with other like minded people with same issues? There's usually chance to talk to talk with a Psychologist which would help you. Also please keep in touch with the lovely people on here!
Perhaps you could set a small task to do each day, such as do the washing up, then the following week do 2 tasks. Perhaps bit by bit you could manage to go a walk and get some fresh air?
Contact your GP Surgery to see if they have a Mental Health Visitor who could visit you?
You will feel better bit by bit, just stay strong and know that there is a community here that is thinking of you, sending you love and light. Take the first step, Fibromyalgia isn't nice to deal with, but you are not alone, you need to take care of yourself X
You poor thing. Fibromyalgia is a very lonely place to be. I was diagnosed two years ago, the pain is debilitating I know. It’s hard to stay positive. It takes away the people we used to be . It’s a hard road to travel . I used to be a keen runner and keep fit junkie. Try each day to do one positive thing, no matter how small. Try writing in a journal . Sometimes it helps to vent it out on paper. I am not in a great place at the moment, but I won’t let it beat me . Keep venting and try to embrace the things that you can do rather than the things you can’t. Xxx
so sorry to read this , it’s not living at all it’s just existing, to be so debilitated like this , there must be some support to help you get back on your feet ?!
I feel pain every morning like this & wonder how I’ll get through the day , but I literally throw myself in the shower every morning to almost thaw out !! And get joints moving & that helps me , I hope you find something that helps you get through the day , take care
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Confused and need help
working with fibro 
Pain and GP
Sorry, I need a rant.........
Dealing with responses from family...
