Disabled/chronic illness pals

[katiesmith81]

Just knowing I have people to speak to helps. My friends all say they are there for me but in reality they aren’t. I’ve reached out to them before. I know people are busy and have their own stuff going on but I am always there for them.
this is embarrassing but my mobility is that bad I fell and done a wee all over the bathroom floor yesterday. I won’t move from the couch now till my partner gets in from work. I have emailed a nurse to ask for advice. I feel too young for carers as I’m only in my 20’s but I don’t know what else to do as I have no family nearby x

Hey least you were in the bathroom and dont worry about being embarrassed, I had a temp ileostomy due to having a J Pouch made for Familial Adenomatous Polyposis once I woke up (had real problems getting the bag to stick sometimes was a nightmare) ended up with the bag once emptying all over the carpet, I laugh about it now but yeah how the heck I managed to clean that up without it being stained probably due to how quickly had to clean it up was quite impressed with myself

Once coming back as I thought the ileostomy had prolapsed (come out like an elephants trunk) so went to A&E at the hospital (ER), when going back when I got out of the taxi the bag when walking back home emptied all down my leg, fortunately (apart from the numerous other accidents I'd have from falling asleep a lot) yeah were the only two major ones yeah one being outside

I mean its probably due to the likes when having myself washed by a nurse or least a HCA after the J Pouch operation when I essentially wasnt wearing anything at all the day after the operation as to why I dont get embarrassed, you take great care of yourself and yeah things like that happen sometimes

Just now getting over a bowel infection haha found out the source for it so will be why nothing much was getting absorbed so quite happy with that

you are not a fraud, pain is pain, people cope with different pain levels in different ways. Plus theres the emotional aspect of it too x

Yeah they very much do, I think after when essentially was put back on foods when having my temp ileostomy reversed (laughed before stating this is round two haha, or where the fun begins) when essentially the bowel hadn't started working due to pain meds so essentially was in crippling agony for about 4 hours was the most horrendous pain I've ever gone through so I can feel for you there

 

[iloveanimals]

Ive had more flare ups than ever this winter. I think the constant doom and gloom of the pandemic might be taking its toll. Hi katie smith81. You are a brave person. xx

 

[Ih8mkinusernames]

A list as long as my arm of conditions, including CFS, firbro
After a missvle battle to gain a level of control back to my life, getting my pain and energy to managable level, being abil to stop using a walking stick, even looking to reduce pain medication.
I've been sent back to that place again thanks to lockdown, post lockdown 1 felt some detraction, but we're not half way thou lockdown 3 and the pain is unbeable agine, I'm struggling to walk to skim the suface
I do not have it in me to go thou the battle agine, it was soul dissroying the last 2 times.
Today i miss a dose of pain meds i cant even sit up, i was doing so well i hardly noticed i missed a dose would think it was a wose day.
I just can live with this.

 

[Anon_Miss]

Hey
I don't know if this is ok to post, but I have long term mental health problems and I am so incredibly isolated and lonely I guess.

I am not like other people my age. I'm 32 and live at home with my mum. I can't work right now due to my mental health problems. I also dont know how to drive.
I've not seen a friend in about 9+ years.
The majority of my social contact is online, even them it is sparingly.

I often feel so behind and pathetic as I often compare myself to people my age, or even younger than me. They have a job/career, independent and so on. Then there is me..

I guess I am ashamed and embarrassed and I hope I don't get judged for posting this..

 

[iloveanimals]

Hi , of course its ok to post. Dont be lonely or embarrassed. You can talk on here whenever you like. Its not a very active thread though, i dont find. You are not pathetic just because you havent got the same lifestyle as others, you would be surprised peoples lives arent all perfect. x

 

[Anon_Miss]

Hi , of course its ok to post. Dont be lonely or embarrassed. You can talk on here whenever you like. Its not a very active thread though, i dont find. You are not pathetic just because you havent got the same lifestyle as others, you would be surprised peoples lives arent all perfect. x

Thank you. I appreciate that.
I just feel like a failure tbh. I rely on my mum for alot if I am being honest and I feel like a burden.
It is hard to find support and people who understand.
I certainly never saw my life playing out like this. Before, I was at College, worked part time and then full time. Then life happened and here we are.

 

[iloveanimals]

Hey
I don't know if this is ok to post, but I have long term mental health problems and I am so incredibly isolated and lonely I guess.

I am not like other people my age. I'm 32 and live at home with my mum. I can't work right now due to my mental health problems. I also dont know how to drive.
I've not seen a friend in about 9+ years.
The majority of my social contact is online, even them it is sparingly.

I often feel so behind and pathetic as I often compare myself to people my age, or even younger than me. They have a job/career, independent and so on. Then there is me..

I guess I am ashamed and embarrassed and I hope I don't get judged for posting this..

Just because you cant work or drive this minute, doesnt mean you cant in the fu

Thank you. I appreciate that.
I just feel like a failure tbh. I rely on my mum for alot if I am being honest and I feel like a burden.
It is hard to find support and people who understand.
I certainly never saw my life playing out like this. Before, I was at College, worked part time and then full time. Then life happened and here we are.

Just because you cant work or drive at the moment, that doesnt mean it will be forever, you are quite young yet. Are you on any mental health support groups on the internet, i know there is some x

sorry , i cocked my post up a bit x

Actually if it makes you feel any better , i dont work or drive either and i dont feel bad about it and im older than you are x

I have just seen an anxiety thread on here, i dont know how to link it, but would that be any use to you

i didnt mean to put that emoji thing on it, but it wont come off now !

 

[DanaScully]

Hi! Checking in. I have ME/CFS, autoimmune thyroid disease and endometriosis.

I'm pacing quite well at the moment so not feeling too awful. Did have an endo flare whilst driving recently which meant I had to abandon my plans and head straight back home.

Sending love to you all.

 

[iloveanimals]

Hi danascully, i have cfs and fibro too. How does pacing work ? Ive been terrible all winter and now its in my jaw too, Sorry for your endo thats awful on top. Love to you too. xx

 

[Belulah]

Hey
I don't know if this is ok to post, but I have long term mental health problems and I am so incredibly isolated and lonely I guess.

I am not like other people my age. I'm 32 and live at home with my mum. I can't work right now due to my mental health problems. I also dont know how to drive.
I've not seen a friend in about 9+ years.
The majority of my social contact is online, even them it is sparingly.

I often feel so behind and pathetic as I often compare myself to people my age, or even younger than me. They have a job/career, independent and so on. Then there is me..

I guess I am ashamed and embarrassed and I hope I don't get judged for posting this..

Hi, I accidentally clicked on this thread but read your post and have been thinking of you.
Was we come out of lockdown would you be able to start taking driving lessons? It would give you a goal to work towards, it would give you something to spend your time on as well as you revise for the theory.
You could take as few or many lessons as you wanted over a month and there’s no deadline or pressure. Also, in my experience (I haven’t passed and have had 6 driving instructors ) driving instructors are great people to chew the large with for an hour.

 

[DanaScully]

Hi danascully, i have cfs and fibro too. How does pacing work ? Ive been terrible all winter and now its in my jaw too, Sorry for your endo thats awful on top. Love to you too. xx

Hi, sorry to hear things have been difficult for you. Winter always seems to make me feel worse too.

Grading and pacing is a tool I learnt when I was diagnosed with ME/CFS. If you search grading and pacing online there should be lots of resources. This covers the basics:

Good luck and let me know if you have any questions.

 

[ProphecyGirl]

My mam has ME, so I can't exactly relate but I know how hard it is for her so I'm sending you all love

 

[iloveanimals]

Hi, sorry to hear things have been difficult for you. Winter always seems to make me feel worse too.

Grading and pacing is a tool I learnt when I was diagnosed with ME/CFS. If you search grading and pacing online there should be lots of resources. This covers the basics:
View attachment 428536

Good luck and let me know if you have any questions.

Thank you very much, i will look into it more, it looks very useful, take care xx

 

[Countrybumpkingirl]

Hi all,
So I have a complicated medical history of multiple autoimmune diseases (type 1 diabetes being the main one) and then 2 and a half years ago I had a heart attack out of the blue (was playing hockey at the time so I was fit and healthy). Last year my health took a turn and my heart got worse again and after a stent was fitted the hospital finally started looking into it all a bit more and I am currently under investigation. My bloods were showing I am positive for the Antiphospholipid syndrome antibodies but the haematologist has said because I haven't had evidence of blood clots they can't for certain say I have it, so now I am being tested for lupus and other conditions. I suffer daily headaches, chronic fatigue and pain all over including arthritis in my hips. I'm 31 as well. I also caught viral meningitis this year which has had massive impacts on my brain and they are still wondering if i am still suffering.
Up until September/October I was working full time and now I just can't work. I am a chartered surveyor and I just feel exhausted 24/7. Just hoping at some point I can get back to how I was a year or so ago

 

[iloveanimals]

Hi countrybumpkingirl, goodness me you have been through a lot, i hope you get a formal diagnosis for your latest symptoms. I dont want to say the wrong thing ,so will leave it there for now. Please let us know when you have any updates. Or just a chat obviously. Hopefully someone with a bit more insight will also reply to you soon, i only really have experience in cfs, fibro and arthritis and even then i am just muddling my way through. xx

 

[TicketyTock]

I often feel so behind and pathetic as I often compare myself to people my age, or even younger than me. They have a job/career, independent and so on. Then there is me..

I guess I am ashamed and embarrassed and I hope I don't get judged for posting this..

Everybody’s life follows a different path , please don’t be too harsh on yourself - you are still very young - your life could be completely different in 18 months time !

 

[Gertrude]

I have Neurofibromatosis Type 1 and I can't help but feel like a fraud when I'm in pain because some people have it much worse than I do (I have a mild case - my tumours are tiny and not visible unlike a lot of people)

I have this! I've never 'met' anyone else with this. Nobody has even heard of it tbh.
I've had multiple tumours removed; one in my neck one on the back of my head and loads of superficial ones on the rest of my body.

I have to get an annual MRI to keep an eye on them, but the one last year was cancelled because of COVID. Hopefully this years one will go ahead. Constantly paranoid that I am going to one day have one somewhere that can't be removed. x

 

[SkinkaareFan]

A list as long as my arm of conditions, including CFS, firbro
After a missvle battle to gain a level of control back to my life, getting my pain and energy to managable level, being abil to stop using a walking stick, even looking to reduce pain medication.
I've been sent back to that place again thanks to lockdown, post lockdown 1 felt some detraction, but we're not half way thou lockdown 3 and the pain is unbeable agine, I'm struggling to walk to skim the suface
I do not have it in me to go thou the battle agine, it was soul dissroying the last 2 times.
Today i miss a dose of pain meds i cant even sit up, i was doing so well i hardly noticed i missed a dose would think it was a wose day.
I just can live with this.

I have very recently had a diagnosis of fibro after 14 years of struggling. I feel there's more than just fibro but don't know how to bridge that without being told that Dr knows better. My surgery is pretty tit but other surgeries are full so I'm stuck.

I have been on the same pain meds for 8 years and have recently been given amytriptyline. My meds have been reviewed several times over the years and when I asked for my prescription this month a pharmacist phoned questioning why I take them and saying she's putting a note on to say I should be taken off them as I'm too young to be taking so many (I'm 30 this year) and telling me they don't help... Even when I'm telling her they do help and when I miss a dose the pain is so much worse. The difference between missing a dose and not is me being in so much pain I just want to die. I'm at a loss what to do, my OT said I should call and speak to my Dr but the receptionists are little hitlers and don't let you speak to one l. I'm so bloody stressed about it and pretty angry that thod pharmacist that knows nothing of me has decided that the pain meds don't help? It's actually ridiculous.

I'm fully aware they don't 100% take the pain away but they reduce to a level where I'm OK to be bloody alive. I struggle with even walking, my joints dislocate alot and are always swollen and burning but apparently that doesn't matter because a random pharmacist knows best...

Sorry for the rant, my husbands probably sick of hearing me rant about it and worry about it so it's nice to share it somewhere else, if you get what I mean?

 

[haveuseenmyfriendbert]

I have very recently had a diagnosis of fibro after 14 years of struggling. I feel there's more than just fibro but don't know how to bridge that without being told that Dr knows better. My surgery is pretty tit but other surgeries are full so I'm stuck.

I have been on the same pain meds for 8 years and have recently been given amytriptyline. My meds have been reviewed several times over the years and when I asked for my prescription this month a pharmacist phoned questioning why I take them and saying she's putting a note on to say I should be taken off them as I'm too young to be taking so many (I'm 30 this year) and telling me they don't help... Even when I'm telling her they do help and when I miss a dose the pain is so much worse. The difference between missing a dose and not is me being in so much pain I just want to die. I'm at a loss what to do, my OT said I should call and speak to my Dr but the receptionists are little hitlers and don't let you speak to one l. I'm so bloody stressed about it and pretty angry that thod pharmacist that knows nothing of me has decided that the pain meds don't help? It's actually ridiculous.

I'm fully aware they don't 100% take the pain away but they reduce to a level where I'm OK to be bloody alive. I struggle with even walking, my joints dislocate alot and are always swollen and burning but apparently that doesn't matter because a random pharmacist knows best...

Sorry for the rant, my husbands probably sick of hearing me rant about it and worry about it so it's nice to share it somewhere else, if you get what I mean?

Sorry to hear things are so bad atm, it sounds horrid. You should see if your GP will refer you onto a pain management clinic/team who better understand pain (the physical and psychological symptoms and effects) and can help you manage the chronic and acute pain better. From a non-medication perspective, I find lidocaine patches help as well as head pads/spray, freeze spray and ibuprofen gel all help, but I couldn’t live without lidocaine patches these days for my joints and back pain. Worth a try if you aren’t already. Sending love 🤍

 

[JOHN1967]

I have Neurofibromatosis Type 1 and I can't help but feel like a fraud when I'm in pain because some people have it much worse than I do (I have a mild case - my tumours are tiny and not visible unlike a lot of people)

OMG you are the first person I have "met" with NF Type 1. I have a serious case.

My tumors are bad, obviously not as bad as the elephant man.
Sometimes the tumors are really painful.