How do I compare?

I know everyone is different and when I read the blogs on how you go out, hold down jobs, look after families but pay the price I wonder am I the only one who CANT do these things?

I can't work any more - I ran my own business which is now run by someone else

I have to have 3 care calls a day from 2 PAs

I cant get myself washed and dressed some days, have to have help in the shower etc

I cant get to the supermarket, or if I do I have to use the buggys. That will be me finished for the day if I dare to venture something as bold as that

My PAs have to do the housework, if I pushed the hoover round it would send me to bed.

I have to take 20 painkillers a day to try and control my pain (which it is still failing to do)

I am hospitalised every 2-3 months for a week with a diverticular flare so severe is requires IV morphine to a level it puts my BP dangerously low.

I am housebound most of the time

I have lost family and friends so am now on my own

I cant keep a relationship going because of these illnesses.

I know this sounds like a moan, but it isnt. This is my reality and I am fully accepting of the fact none of it is curable, just masked with increasing pain meds. I am in fact not bothered by it. Being stressed about it doesnt help just makes it worse. My Affairs are now in order (Will, provision for my pets etc) so I dont leave anyone any hassle trying to sort my stuff out after I am gone.

However, I just wondered if I am in a minority being like this, or if this is a common reality. I read people with parts of this, but not all. Guess I just wondered if I am just a freak, thats all. Comments please

10 Replies

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  • well for a start you are not a freak you are a real person with feelings like us all but have been dealt a rotton card in life but you are o positive about it which is lovely to hear bless you i am glad that you have all the care you need and that they look after you mwell by the sounds of it i bet you look forward to them coming in and they are like your family . i am sorry that you are aolne you say as in lost all your family and friends well they cant be riends if they have turned their backs on you ! i have a fantasyic family and friends theyntry to understand they listen to me when i tell them what it slike this fibro but unless you got iyt i dont think you know do you

    i too am on about 20 tablets a day i do push myself alot but some days i do just sit in a chair all i can say is i get up and do what i can on that day but you are not the only one in your position alot on here as like you and there is nothing wrong with that ,

    i hope that this sitewill be like opening a door for you and we all become your new friends on here and we are all hee for you good bad positive negative dont matter funny stories sad stories you just put on here what you want and i hope tat by being on hee you start to feel good about yourself and that you have a purpose which is to be on here and blog to us lot , and no more talk of having things in order for when the time comes!!!!! you aint going nowhere ! so get your thinking cap on and tell us something funny that has happened wwith you and our friend fibro we all get some right old tales on here love to you diddle x

  • I think it just goes to show how varied this illness is . Also I think a lot depends on what other illnesses run along side it .

    You're not a freak, you're ill . It hits some really hard and others mildly.

    I have other illnesses and I am housebound most of the time , and bed bound some of it. I don't work, I couldn't. I wish I could it would certainly be less hassle than dealing with the DWP ( which can be a job in itself ).

    It is stressful, and you're right the stress certainly does make it worse. But how can you relax when you're in constant pain ? Fibro fog makes it difficult to concentrate on things too .

    I had a conversation with my dad last night, he's ill with some unknown problem that causes his throat to lock up and he starts choking . It's very scary for him and I know he's desperate for an answer and feels like giving up. He's 74 .

    I told him last night , that sometimes the human body is a mystery to even those who are trained to understand it and all we can do is keep dealing with it and trying to live our lives around it . Giving up isn't an option because there isn't a realistic alternative.

    Hugs for you.

    xx

  • HI julieru,

    You are not a freak!!!!!!!

    You quite obviously worse than alot of people , but there will be people on here that will be in the same position as you and i hope they will come along and help you.

    I am on a load of tablets too and have multiple illnesses to contend with but i have three kids and i have to get out of bed everyday, if i didnt then i simply wouldnt. The task that i have to go through just to get up and sort the kids for school is awful but i have to smile for the kids sake.

    I actually got this fibro from giving birth to my second daughter, but she was worth all of it. :)

    I am sorry you dont have family and friends, but like diddle said your friends were obviously not worth it. I know who my good friends are.

    My life is going down hill all the time and i actually do think i might end up in a wheelchair at some point but this site is teaching me alot about other peoles illnesses and more importantly about myself.

    I am going through a phase now that i make an effort to take the kids on a short walk or go to the park and even go shopping for food. But i know round the corner i will be floored and not be able to do anything.

    It is a horrible illness for everybody who has it

    I am sorry what you have to go through everyday, and you can always pm me if you are feeling lonely hun,

    Take care, hugs, kel xxxx

  • Julie. Know exactly how you feel. I've been ill since 1989 when I had to give work up. Maybe if I hadn't pushed myself too much before then I might have avoided the position I am in now. I admire all all you people who are able to get out even just to walk up the road. Miss my days of running around town in my lunch hours and most of all all my old friends who have disappeared off the face of the earth.....wonder why!! I too have diverticultis flare up,in fact had a very bad one last week. Those days just starve myself and drink water and stay in bed. Find its tghe only thing that works. Cant count the number of times I have been carted off to hospital and put on a drip. After about 3 days they turf me out.

    Julie,don't for one minute think you're a freak because you're on here there are loads of us here feeling just the same. Have been out about 4 times this year and that has been to the doctors. What for I dont know. Find that dyhydrocodeie is the only think that helps me. But then that binds you up so you start worrying about when you're going to go to the toilet properly again, it's one viscous circle and one lonely life, No body understands. Having really bad pain now, think I have trapped wind around my waist in back.

    Have todrag myself every morningand dress myself very slowly. Sick to death sitting in the chair all day in pain. Would be lost without my husband. Am letting him off tonight to go to Wembley. He's only going overnight so I will take my rice crispies tobed with me for morning. Cant ruin his llife as well.

    Would give anything to be able to get out and about. Good job we have the TV.

    Take care and look forward to hearing from you again.

    Remember your not alone.

    Avril.X

  • just wanted to reiterate what everyone else has said really, i had to give up work about 4 years ago, and can be housebound sometimes, i have lost contact with quite a few friends, i really thought i was all alone untill i came on here, i am also on the thyroid one as i have multiple illnesses too, such as COPD. (a lung disease), take care of yourself and remember people are here for you, sending love and hugs. Sue, xxx

  • i really felt i wrote this post instead of u... that is exactly how my life is.. cant do much for myself anymore.. dress. cook shower ect.. i sometimes cant bath or shower.. and have bed baths because the cold when i come out makes my pain terrible.. i used to have carers in.. but it was costing me £11 a hour.. and i could not afford it.. my family have to do it all now.. or i just have to sit about till someone can help.. thats why i find this site so helpful.. as i feel i dont have any life as it is...i love my cardmaking but very rarely get to do it now.. hope ur ok today. i do understand how u feel.. gentle hugs xx

  • Other than not also having diverticulitis and somehow holding my marriage together, I could have written that 5-6 years ago.

    My Fibro is now largely in remission, thanks to effective treatments (both strong medications and non-medication treatments) and ongoing care of myself (e.g. doing physio exercises at home).

    So yes, it can be very severe. Fibro can have more of an impact on a person's life than many other chronic conditions, including Rheumatoid Arthritis and Osteoporosis.

    But it is NOT the case that nothing can be done about Fibro.

    Having an uncontrollable severe condition alongside will certainly make controlling the Fibro harder as a diverticular flare is likely to cause a Fibro flare. But perhaps you could get better quality of life - that should be the aim of your treatment.

  • The diverticulitis will cause a fibro flare, will cause an ME/CFS flare, will cause the diverticulitis again round and round we go. One is always active. My diverticular disease is so advanced it is inoperable, I take morphine every day to keep the pain down to a level I can tolerate (not zero) I am on 1500mg of Gabapentin to keep the fibro pain down (but not at zero) and my specialist is still working on getting the correct dosage, but as you know you have to be weaned on and off gabapentin. Neither the diverticular disease, fibro or ME can be cured, I have to live with them and the pain managed as best as possible. I wish someone COULD cure them - they would make a fortune and I for one would be on my knees asking for the cure. Management only works when the diseases are in low phases, once they flare, then as we all know there isnt really anything we can do but hang on until it subsides.....and mine take it in turns to flare. Very wearing.

  • Actually, I would recommend proactive treatment for Fibro flares. They are often linked with particularly poor quality sleep and a flare in myofascial pain. In my case, I have now also identified that a flare is linked to a disruption to my neck (I strongly believe I have PC3).

    Additional meds to improve sleep quality can help shorten the length and severity of flares.

  • Hi ya, i do know how you feel, and i'm sure there is lots of us just like you, your really not on your own, i to am in your situation, i have been in a wheelchair for the last 3 an half years, i cant do anything for myself,ie shower/bath/hair wash/dress myself/cant cook ect, just sit all day and when i'm really bad i am laid up in bed sometime for days or even weeks,but in pain 24/7, i also have a number of other illness'es ( long list) ...... We soon find out who our true friends and family are when you are in our situation,i can count my true friends on one hand, i'm just very lucky to have a wonderfull partner who cares for me 24/7 and does everything for me. We all have to stay strong even though we have days where our pain is unbearable,and feel like we cant carry on. I think i have been out of the house twice in the last 6 weeks,but when the warmer weather comes will make us all feel that much better, stay strong and positive hun love and big gentle hugs just for you xxxxx

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