Hi everyone, I've joined because every one I meet or know I have to ask them to please Google my conditions for you to understand my presentation, my lack of interest, the pain, why I find it difficult to" join in" I have just survived collapsing at home with Sepsis March 2018 after two and a half days on my lounge floor I crawled to front door on my back to scream for help. The pain was indescribable after many CT and MRI scans I had an abyess on my spine which caused me to have spinal damage to lower back, then June 2019 months later diagnosed with fibromyalgia anything else I ask myself come on give me a break figuratively speaking that is, so now I have Post Sepsis spinal damage and now this I ask myself why why me. I live on my own no family trying hard everyday like others to survive, I'm NOT looking for a hand out do you know what I want like many of you out there for someone please just understand me! I feel I have to explain every time I talk to anyone. I'm so tired of doing this that's why I thought if I joined a group of people who can truely understand me why I can't join in anything Christmas day took it out of me I was struck down with what I call an episode a week of pain tiredness temperatures awful no one can do anything and during those times I can't pick up my phone? cause of the immense struggle to do so. Sorry gone on a bit but I find my health very lonely I'm on bed rest every day I have a window of hours maybe to do anything.I hope I can just talk to others that understand.
Diagnosis Sepsis Spinal damage NOW Fi... - Fibromyalgia Acti...
Diagnosis Sepsis Spinal damage NOW Fibromyalgia what else?
Do you have a physio on board? Ask them to find you a hydro pool neArby where u can work on all ! Your problems..the pool I use takes in stroke victims with good results..I do travel 10 miles but it's worth it to avoid deterioration. Nhs transport is available.I have a neighbour across the road who had a stroke last summer and he is going to same pool as me via an ambulance transport
Hi NurseGladys123 I am unable to do anything I'm not strong enough to walk get in and out of bed due to spinal damage weak on both left and right but it's so easy to say hyro pool it's lovely thought but I can't bed rest is my only option. Trust me when I say the 3 crippling health issues have left me servely disabled I get living support which was very hard to go through. I just joined to say hi and to be added to the numbers of suffers. But I don't want advice on getting well cause I no I won't I come from nursing and if I was nursing me I'd say poor thing no life. I'm on a lot of medication morphine etc and if your a nurse knowing my "ailments" I can't sit stand lay only relief is laying foetaly on my side that's it i just would like to talk to people.
A very warm welcome molierose. You 'go on' as much as you need we do understand that on the forum. Are adult services within your council able to offer you any support? Not knowing where you live i would say try an access a support group so you can get social contact with others living with Fibro.
Hi Skit I have support for living the problem is I have got serve disability with the 3 health issues all together. I am to tired for social meetings I'm sometimes to tired to talk. I just thought I could just reach out today to say hey I'm here I suffer days so badly I just wanted to add to the number of suffers. You must understand I'm from nursing I take a lot of morphine which helps a little or numbs me I say to people If I was nursing me I'd just say poor thing.
Hi.
You are in my thoughts and prayers. You can pm me whenever you feel the need to. Lots and lots of love and hugs Lynne xxxx
Hi Oldham 12
That's very sweet of you, I'm of the generation I'm old but not 59 in a minute not understanding certain abbreviations what's pm? You know something I've looked after my family my Mother's sister a dearly loved Aunt more of a Mother than my Mother as well as my Mother who at the end suffered so. So with working in a hospital environment I was going home to work sadly my Aunt passed then Mum December 1st 2017 so I decided I should now start my life I wanted to move away a fresh now my life is like a book, I started packing cut phone off right where do I move to? Well March 2018 I went to sit down with my dogs with a coffee went to sit down but instead BAM ! I collapsed that's mostly all I remember 21/2 days later all I recall was crawl to the door 2 rooms right of me or left to kitchen for a drink in went right. Answer Sepsis great I didn't no it was a killer imagine me in bed sheets pulled up tight and Doctor said Mollierose you have 60-40% of dieing I just asked which % was I? That's the only time I cried for my mum. The story obviously gets worse it's just difficult for me as I get lonely not because of the move I used to be so dam active a people person now I'm holding off the day I have to ask for help again but not yet I'm not ready. Say a prayer for the lost sheep you've just read about. X Thankyou
I'm so sorry at how you feel. Please don't feel alone, everybody on here will want to help you. Pm means private message. Please get on touch, if you need help I'm here for you. Love and hugs Lynne xxxx
Hello Mollierose,
I too live on my own but not in nearly as much pain as you.
I just wanted to say hi and send you a great big gently hug.
I know a little of how you feel emotionally.
Oh wouldn't it be lovely if there were someone to make me a cuppa now and again!
Sue x
Hi Sue Gentle hug recieved can I ask your problem. Firstly I must explain any spelling mistakes not me the pretext I have to use due to my jerking arms hands phew! That's the spelling sorted. I thought life was going to be easier than this. Opps how wrong was I.x
Hi Mollierose
I have Fibro, Rheumatoid arthritis in most joints and Osteoarthritis in my hands and feet. I sadly had to take early retirement from a job I absolutely loved and find life a little lonely at times.
My fingers have nodules on the joints so I am unable to clench a fist or even bend my middle finger on both hands. Undoing a box from Amazon is truly a sight to see and would just make you laugh.
The times I've tried to open something with a child lock (ie bleach) and just given up.
I must admit I've just started a good quality CBD oil that Zoonie on this site mentioned. What a difference it has made! Thanks Zoonie.
Whereabouts are you Mollierose? Anywhere near me in Essex? xx
Isle of Wight. I no how funny as you have to laugh at times mine is I can only wash up once as that's as long as I can stand and you can tell when I'm reaching the end as I get shorter where my legs are giving out, or when I'm rushing but a snail can still over take me, I have to use pretext so sometimes I still make mistakes as I jerk alot so my thumbs tend to keep adding letters so that'll explain any confusing words from me. I think u have to laugh at times there's enough sadness. I could write a book but only people like ourselves would understand you no I moved here can't believe I did with help alot of it but paid consequences of bed rest. New Doctor went to see intreduce myself as that's what you had to do and she asked me ! What do you want me to do? Like the doctors in hospital I told them address the pain luckily as I have medical training I insisted I had enough to calm it not stop it as ito morphine.
I got my fibromyalgia diagnosis after sepsis too...the latter also left me with insulin dependent diabetes. But unlike you I live with my husband and grown up son and daughter in law so do have some company and help, but pain and weakness has reduced my ‘traditional’ (retired) role of cook and housekeeper greatly, and no one has taken them up with any great enthusiasm! Sometimes I just have to stay in bed to avoid the effort of being social or doing things etc, then feel guilty So there are swings and roundabouts of living with people. I know you are not looking for ‘cures’ but I do find trying a daily walk helps...getting me out the house, I enjoy the much needed exercise ( sometimes like tea-leaf steps) but especially being aware of the seasonal changes. It doesn’t leave much energy left for much else; I also read in a long hot bath . I don’t explain my health to most, I have the impression most have no idea how bad fibromyalgia can be, even close family I don’t see much may not realise I need 3-4 times the time to pace simple jobs for eg preparing for Xmas etc. There are always sufferers on this site who like a sympathetic ear , so continue to write Mollierose. Good luck.
Can I call you Judith a name you hardly hear these days, I can't walk I have a wheelchair but can't sit stand longer really than 5 minutes but you'll understand "the good days" I try with all my might to take my 2 dogs for a walk it does me wonders I love it but as you say it's a lot to do then your fibro will almost punish you for enjoying yourself and you have to then go through what I call episodes all different but you no its pain etc etc. Can I just say because my body jerks my spelling is pretext but my jittery thumbs add more letters so sorry now for now future misspelt words. How did you get through Christmas it took me a week after Christmas day to recover how stupid does that sound but I feel you'd understand? X
Yes, had Christmas at my widowed 95 year old Mum’s 4 hours plus drive away...went down 3 days before to tidy up etc with many premade dishes and shared cooking with brother, and young family doing washing up, but still had another 24 hours there after to put everything back in cupboards etc; still recovering, but good memories. Fibro is a vicious circle...you can’t do much due to pain and weakness but on better days ( eg noticeable for me when in hot climate on hols), you notice you can’t do things due to deterioration of muscle strength...so I do try to walk, but arms/shoulders need some exercise. Years ago I used to swim daily, and was a strong swimmer, this last holiday hardly managed anything against sea current!
As a former nurse myself I understand your frustrations, my son is my carer which worries me as it is likely to make him unemployable, as he has no work skills. As soon as he left college he was straight into being my carer.
It troubles me somewhat that you have apparently given up on yourself, is there no help you can get to help you mobilise? Laying in bed all the time will leave you open to pressure sores, and further loss of muscle tone, but you know this already.
I would go along with Nurse Gladys, that water Physio might help, Doctor permitting; and in a warm pool, it can be both soothing and help you get some strength back in the muscles. It's worth asking.
Do you have any help from a Pain Clinic? That is another thing to consider.
Please don't write yourself off, there are always things that can be done to improve your abilities, even with Fibro. We don't call ourselves Fibro Fighters for nothing!
Cheers, Midori
I haven't given up if I had I should of died when I had Sepsis trust me I'm a fighter. I just wanted to reach out have outside contact. I don't drive I can't sit or stand yes water spa oh how lovely but I'm 24-7 bed rest due to also spinal damage whichas affected my legs. I don't want carers as I feel I'm not ready for that. Your extremely lucky to have a doting Son good on him. Maybe he should look at IT schooling I don't no what they call it these days online tutoring?
Midori Please listen to me your becoming brainwashed like the Doctors out there I've told you my condition is serve I am also from nursing so I'd have a heads up on "whats out there" pain clinic programmes you into rethinking when I'm that ill lying in bed exhausted unable to pick up the phone when I'm trying to walk to my kitchen whicheck to a normal walk ten steps me 10 Minutes trust me rethinking is not going to cut it..... once again you say I've given up AGAIN I say I haven't I've told you if I wasn't a fighter I wouldn't of survived SEPSIS .. I don't think you and I should continue to reply to each other your support hasn't been helpful. You keep telling me what I'm thinking or feeling and it's so untrue I've not once been negative or expressed giving up. I no there is no tablet in the world going to repair my torn body but I'm dam sure I will support others who need to express themselves without any negative reply or by saying there's a clinic out there i think the Government need to make awareness aware.
Ouch! That was harsh. Also somewhat unnecessary. We all have Fibro here, and I was concerned that you were in bed and unattended.
I don't quite understand that you say I've been unhelpful Again; I've only posted once, and I was concerned that your post seemed depressed.
Don't worry, I won't try to be helpful again.
Hello, does anyone come by to check on you regularly? Do you use a wheelchair? How do you get shopping or eat meals? Do you have a carer?
I too live on my own. On the whole I prefer it, but I have been dealing with quite excruciating pain for the last three days that is lower spine related, I can’t stand up straight or move around much at all. My pain killers aren’t really working. I’m thankful that I can still move a bit. I can really sympathise with you.
Hi "Vintage" No no carers I'm not there yet... I I get scared when I'm on my own going through what I call all different episodes of this dam illness. I at my age do online shopping I eat a lot of cornflakes easy very quick micro meals. Yes when I'm very lucky and fibro let's me I take the dogs out but I still pay the consequences. Yeah your body gets used to the medication I always feel that's the time to get Doctor to review dosage.
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