Fibromyalgia Action UK

Exhausted, but have to carry on!

Hi, couldn't remember how to writes post, which was a good start . Feeling worn out physically and mentally Back is agony, waiting for injections in sacrealatic joints Bottom of spine and surrounding tissue agony, even hurts to sit, and even more when I move or tense up, knees stiff , sore and muscles and calves tight and painful Hands puffy and every joint in them hurts Wrists ache and pulling down tendons , will leave it there , or sound like I'm having a right moan! This has been the norm for me for many weeks , but getting stiffer and more pain and less movement, even tinnitus has kicked in big time ! Our daughter who has severe asthma and is in her own with three children has had big problems with 17yr old don on internet Police involved , we are finding hard to come to terms with this , so I've had darling three year old granddaughter for three weeks She is a joy to have, very intelligent and entertaining , but I'm worn out ! My OH is more shirt tempered than ever, doesn't deal too well with my illness Will do anything for me, but very snappy and short, don't think he knows how to cope as I get worse Our son and girlfriend who live here most if time do nothing but mske a mess snd not clear up, my own fault as I've always done everything myself , don't think any of them want to accept I can't anymore , I do keep going full on , ironing cooking , which are all agony and leave me fit to drop Good old British Willpower!! Now more worry as granddaughter who was in Paris studying at Sorbonne when the terrorist shootings were on her street, Last night the Bethnal Green acid attack was right outside her flat, she's in London working at the Guardian for a couple if weeks More worry!! Also our 20month old Grandson of our other dear daughter and her lovely husband has been in hospital again with respitory problems Ok now Sorry for this long rant , feel better for it Thankyou so muchbifvyou have read this, makes me feel not so alone! On a happier note our daughter with 20 month old has just told us they are expecting another baby in February, So so sorry for going on, hope every one us as well as can be and has a lovely day Many thanks and fondest regards , and Thankyou all for sharing the pain snd the joys we all experience PS trying to get through thus med free as still having battle with myself over Fentybal patches, but I can't afford to take snything that affects my functioning more than Fibro Chronic fatigue Arthritis Hypermobikity Sjrogrens etc do , at the moment as need to be compus mentis , and all the Meds give be horrid side effects and spaced out, don't need that! X

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Hi Sancut wow that's a massive amount of stress my friend. I'm not surprised you are struggling and in pain. I'm so sorry you are having to contend with all of that. Please please don't think your moaning or going on, that's what we are are for to support each other, you are never alone honey. There is normally someone around, I have got to come off as I have few things to do but I will write more when I return.

I think as a start, you need to get some information from here nhs.uk/Conditions/Fibromyal...

Call a family meeting and tell them this is what you are dealing with and tell them you are suffering from a chronic pain condition and it is vital that you pace yourself to help with reducing flares or the severity of them. Be firm & tell them they need now to pull together and help you or you will end up in hospital & won't be around to do anything.

Have you been referred to a pain clinic ?

Will reply later

Luv Jan xx

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Thanks so much for the support Jan I'm just sorting Lily's lunch at the moment, hopefully will get time when she's in bed ,this isn't usually until about 10pm , as her mum has no routine for her bed , wer'e getting better with it though , to read your kind reply more thoroughly and check out the links Your advice is really appreciated It's so good to have someone to talk to and I think seeing it as an outsider you see it more clearly and what to do in the situation Speak soon Hope you have as good a day as possible , Sandra xx

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HI sancut how are you doing today have had a lot going on haven't heard from you checking how you are xxx

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Hi, so kind of you to check how I am . Like you had rather a lot going on. Had little grand daughter all week till yesterday and my husband been working about three hours drive from home on nights Bless him he's driven home each morning , gone to bed for a few hours and then helped me Away tonight and tomorrow also Went to GP Wednesday as in agony everywhere, IBS also decided to make my abdomen feel like a truck had run over it ! Dry nose, eyes and mouth really bad, so she gave me different drops for nose, new ointment for eyes at night and mouth spray and pastilles to suck! My little Granddaughter thought it hillarious Nannie had to put medicine in eyes, nose and mouth, and started singing Head, shoulders knees and toes! I did explain in great detail she must never do any of these things! I'd also had a really bad stabbing pain in my left side through my ribs, which almost stopped me moving the previous day, whilst attempting to see to Lily, it lasted a few hours and calmed when I went to bed after a while Mentioned it to doctor, no interest whatsoever, like a lot of us get when mentioning something different, I was told probably your Fibro! Anyway still here, so just plod on. I did tell this GP( she's senior partner) that I wasn't useing the Fentynal patches, my own GP not happy about that, but this one agreed with me that best to try and cope with just over counter painkillers and trying to adjust my life to make the pain etc easier to cope with , especially after all the mentions Fentynali has had in the press this week! I lie awake at night and imagine if it wasn't for family commitments and I was on my own how easy this would be to do! Then I think Yes family are a pain in the butt ( literally at times with the driving I do for them) but would I be happier without them? A big fat NO! So old on it is! Oh for another strange doctor experience, went to chronic pain dr last week , he decided I needed more injections in Sacrealiac joints in back, tried asking him if anything for my knee which is agony with Arthritis, hypermobility etc and of course the fibro, he cut me short mid sentence saying he wasn't a knee dr, only did backs, but I would be good as new after back injections! Evidently he performs miracles! Watch this space! I hope you arnt too bad at the moment, and manageing to enjoy life best you can, speak soon , hsve a good evening, All the best Sandra x

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My you yes you have a lot on your plate my dear please take care I think your husband sounds really supportive and with a job tired too lovely you have your little grandchild I too have four daughters 2 boys aged 7mths 3 years old going on 20 my son 27 back home through split (not his fault so had 9 years of horrible stuff come our way) girl 7 boy 4. Thanku for your kind words woke up today about the same but havin hot drink reading your posts reassuring each other makes me feel on the bad days not so alone . Have a restful Sunday xxxx

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Sounds like you have a lot on your plate no wounder you are exchusted take care all the best

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Thankyou so much Hope you are as well as you can be x

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Hi Sancut

I really an so genuinely sorry to reads of how you are suffering and struggling my friend and I agree with Janet28 as you have so much going on for you and it could make you feel worse and end up in a vicious circle. As Jan says, ask your family to help, if they make the mess get them to clear it up. I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you

Ken x

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Thank you so much Ken, believe me I do ask them,but to no avail. To add to it all my husband just rang to say he's going away with work tomorrow until next Friday He's very private and work arnt fully aware of my health conditions . He basically told them he hadn't worked on these machines before in as n attempt not to have to go He thinks because they know he has taken me to hospital appointment t s that they are aware, but they've never been told! I've asked him to take the Rheumatologist letter in which outlines all my condition s and implications, but that won't happen I feel rather pathetic that I can't cope physically or men t ally on my own for a week , I also have my darling three year old granddaughter here still, whom he helps me with after work I wonder ed d if you or anyone knows what the situation is legally regarding work if he refuses to g o ? His manager etc are not pleasant or helpful Sorry for the moan again. I do hope your health improves Ken and wish you all the best for the future x

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Hi my friend

I am not sure how he would stand legally? As they probably would have needed to be made aware prior to any work being issued? I agree with you completely and taking the Rheumatology letter in to work would probably have helped a great deal.I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you

Ken x

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Thank you so much for your reply Ken. He has told them a bit now can come home some evenings. We just have as l o t on our plate at the moment I seem t o be the worst I've been, with everything at once, which doesn't help. Rather tired I think! I hope you are feeling as well as you can , I wish you could feel better with all you do for others . I do think having s o many health problems does make you more understanding o f others, but it is as gift to be as helpful and understanding as you are.

I don't know if it's acceptable to ask, but I wondered what type of writ I ng you did and as an author. My grand daughter who j u st graduated in Medieval Language's at Cambridge is working in London at the Guardian for a few weeks ,,I and has two pieces going in on Sunday, I think one is on the Tower block disaster, and th e other an Arts piece. She writes a lot of poetry as well, an d won Doyle's young poet prize a couple of years ago , with her poem been read out at the Proms at the Royal Albert Hall, we got free tickets ,,I so that t was nice ! She's doing a couple of weeks as like assistant poet in redid e nice at Ilkley and Beverley Arts festivals. Isn't it great the opportunities there are for th e m to day in the Arts Hope I having bored you, just thought as lighter note to things All th e best to you an d your dear wife, Kind Regards, Sandra x

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Thank you my friend that is gneuinely appreciated. I have written about quite a few genres depending on what I have been commissioned to write. They include the paranormal (from my TV days) and philosophy and modernity. The last series of books that I have written were fiction. I used to work in Journalism many years ago and have done a stint at the Guardian and 3 other broad sheets. I would like to sincerely wish her all the best of luck with her endeavours.

Good luck my friend and please take care.

All my hopes and dreams for you

Ken x

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Hi Ken, Thankyou do much for taking the time to reply to me,wow what an amazing and interesting life you have led! It's very clear from your replays what an intelligent , knowledgeableguy you are! I'm always ashamed of my typos and lack of punctuation etc when I read your communications . Sorry I've taken so long to reply, not been great snd rather up to my eyes in it! I really appreciate you sharing your achievements and Thankyou sincerely for your good wishes for my grand daughter. I hadn't realised health problems were making it do you couldn't carry on as senior admin, everyone will miss you so much, I've not been on here long but somehow your prompt replies, genuine caring made me feel a lot safer, I do hope you will be well enough that we keep hearing from you With all my heart I wish you and Julie as good health as possible into the future, all my best wishes Sandra x

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Thank you Sancut my friend, that is truly appreciated and I am trying not to blush lol! :) I have had a good carer in my life and am satisfied with what I have achieved. I genuinely hope that you start to feel better soon my friend, and please take care of yourself.

All my hopes and dreams for you

Ken x

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Dear Sancut. Youhave far too much on your plate. What are the priorities ? I'd say supporting your daughter with the three kids on her own.

So son and girlfriend have to wise up. Draw up a rota of tasks and insist they do them. Remember they are being selfish and you have a right to not help with household tasks but having them distributed fairly among the adults. Sorry if I soun d quite fierce but I get bewildered how much live at home grown up children get away with.

Just one point on the ironing. Do you really need to iron this ? Ask that question for every single thing. If it's for an adult let them do it if they want it done.

Concentrate your energies on that lovely granddaughter. They are a joy are they not ? But such hard work.

Take care

Dee

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Thank you s o much for taking the time t o reply.Everything you said is so true, I've tried and tried to make them understand, to no avail,To add to it all just had a phone call from my husband to say he has to go away with work,he's a fitter, tomorrow until next Friday, he say s has to go or loose his job. He hasn't told ty hem my health problems, he's very private, j u st that he hasn't worked on that machinery before, so he has to go I said he could take the letter I have from Rheumatology to show them which s t area all my conditions and mobility issues, but he sees this as private, He normally clears up after tea, sees to dog, and helps with Lilys bath and bed, although he's rather short tempered with coping at the moment , it is a great help and support Sorry this has turned err Ned not o a main, just not what I needed at moment All the best to you and thank you Sandra x

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Hi Sandra. You know that your health will suffer more if you don't get this sorted. And your husband's who will be worried about you. Please don't let it get to crisis point where you have a physical melt down and the whole things comes down around your ears.

Remember when your were boss when your son was a kid. Retrieve that inner mother and lay down the law...... gently and kindly but with a steely resolve.

Best of luck

Dee

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