Coping - how do you? (warning, moan alert!)

sulkycat

Sooooo ... so far I am being advised to listen to my body and sleep when I need to etc. I have ME as well as RA, OA and digestive issues and angina. Lucky me! So when the tiredness hits it hits with a great big hammer. The cartilage in one knee is coming apart and needs an operation, I am waiting for a surgeon referral.

The pain at the moment is pretty much 24/7 in varying degrees from a dull ache to extreme - sometimes I sleep at night, often I don't. I take sleeping tablets every third night. I am permanently exhausted at the moment which I have put down to coming off 25mg meths injections and starting sulfa and a maximum dose of Tramadol.

I can't do the things I used to do to relax such as swim, sew, paint etc. I don't work anymore (and neither does this little body!). Even holding my camera can be painful. Yes I am frustrated! I live alone and find everyday tasks pretty difficult to say the least, as I am sure everyone here does. I am stubborn and independent and find it really hard to ask for help.

I am from a long line of 'grit your teeth and get on with it' family but it's getting increasingly hard to do that or stay motivated. Don't get me wrong, my mum and daughter are desperate to help and upset that they cannot take away any of this pain.

How do you all stay sane(ish) and manage the pain? How do you all pass your time - I seem to do a lot of nothing. Help please!

There - I did warn you this was a bit of a pity party sort of post, sorry.

dibdab

Gosh, it sounds tough right now! Sadly no one that doesn't struggle with this stupid ailment can really understand how debilitating and wearing it is. Life is hard when it wears you down, sending you understanding, sympathy and very gentle hugs (((((( :oops: ))))).
Debx

stickywicket

Hey, sulkycat, you’ve twigged already – most of us are only saneISH. Too much sanity doesn’t mix with arthritis. It tends to make you take it seriously and then it’s got the upperhand. That would never do.

I tend to ‘pass my time’ doing all the stuff that used to take minutes. Stuff like getting dressed, tidying up, having a bath….Now there’s one that used to be simple. Run bath. Jump in. Wash. Get out, dried & dressed. Nowadays it features a bath lift, pick up stick, walking stick, stool, dressing stick, you name it. Major operation. Every day. Except now that Mr SW has put his foot through the bath & the insurers are on a go slow. Now lots of other stuff comes into play, too. It aint pretty. It takes forever but I value my friends so needs must.

I rarely do ‘nothing’. I just spend ridiculous amounts of time doing very little apart from tiring myself out. Then I do the exercises to ensure I can carry on doing the stuff that tires me out. SaneISH, did you say? I’ll take it as a compliment.

Seriously, sulkycat, you seem to have a lot to contend with, even before you get stuck on the change-of-meds merry-go-round. There's almost certainly going to be an awkward period when one stops working and the other hasn't yet kicked in. Hang on in there. It'll happen.

I’ve never taken Tramodol but I’ve heard a few people say it wipes them out. There are other paindullers about.

The one bit of advice I’d give you is to try not to give up everything you enjoy or, to put it another way, try to find something that you can do everyday that you really do enjoy. We’re all different so what pushes my buttons is unlikely to push yours. Just find that all-important something that arthritis can’t take away and make sure you take it as regularly as the other meds.

And, when all else fails, or better still before then, talk to us. We can’t take it away but we sure as hell can understand.

Colin1

Hello Sulky
Its good to listen to your body, ite weather or not you take any notice of it that matters.
Its difficult if you sleep in the day and then can’t sleep at night. I hate being awake through the night. Like you I have multiple problems Apart from the PA/ RA/ and Fibromalgia. Yes the pain can be hard to cope with and the 24/7 is harder tends play with your mind a bit when you suffer so much. The extreme lack of sleep combined with the pain can make you feel so ill along with the complication the meds can cause.
It is indeed life changing, all those things you used to be so good at all slipping away if not gone. I can still hold a pint glass with two hands but it makes me look so stupid, and I tend to walk a bit like a penguin. I have my wife and Kids and over time I have learnt not to be so independent, dot get me wrong I like my independence and family need me as much as I need them, its a 2 way thing. They seem to know when I need a little help and when to cut me a bit of slack.
I have learnt a lot about the wife and kids since I got what I call sick and you must remember they need to be loved a needed they need to know what’s going on, yes I know you don’t tell all otherwise it would seem you are moaning 24/7 but believe me they need all the love and reassurance you can give. We travel a long and varied road and they travel with us every step of the way.
Ill tell you how I cope and how I got through the darkest of times. I excepted myself for what I am and not what I used to be. My wife and kids still love me no matter what I am Or how I am, I can now laugh at my own funny walk and I skit myself when I can’t do things. Do you know I must drop my knife fork spoon every meal time and not one of my family have ever said a thing.
Some days it is real hard to motivate yourself and there are those days where bed just calls you or wont let you get up.I used to have days where I would stay in bed most of the day But that made me worse I could not move for the pain. I decided nothing to do but get on with life I was missing out so much with the people I loved the most. I started going out more and being more involved with the extended family. On the days I never went out I would potter in the garden or garage to keep my boddy on the move and my joints going. Then a miracle happened I was given a drug called Rituximab and within 2 moths I was out of the wheel chair. Ok ill never leed the life I led 5 years ago but life is so good. Yes I’m still in pain but its my pain caused by me doing things, I could stay home or sit in the chair but I would rather go out feeling ill than not go out at all.
Hey Sulky I don’t know what you done here but thats the most I said in years. Its good to get things off your chest and people like us need a good moan from time to time. Its good that we have this place to come to and talk to people that understand. I hope I haven’t depressed you with my good fortune of the rituximap yes I know one day it will stop working like most of the meds have but for now ill make hey while the sun shines
I picked up a little slogan I use on the way
Take care I hope you feel better soon keep your chin up and don’t stop smiling Thanks for the chance to go on sorry its a bit long but you did ask how we cope LOL
God Bless you will feel better
Colin
WHEN GOD GIVE YOU LEMONS MAKE LEMONADE

Colin1

Hey Sulkycat just read your profile no wonder you feel so bad you have done so much. Regarding swiming i joined the activity for life at the local gym its free throgh the GP. Swimming or Aquasise its totaly at your own level and there are people looking after you all the time. It includes people of all ages shape and size so you tend to fit in ok. Sadley i had to stop because i developed a lung problem. I know you feel so ill and things are really hard for you at the moment. Its not just the exercise but the social thing as well.
Please take care and i hope i'm not teaching you to suck eggs
Colin
have a little hug from me there you go.

dreamdaisy

I've just mown Mr DD's thatch and that involved standing for about 15 minutes ('cos he was sitting on my perching stool!) Now I'm sitting for about 30 to recover then I can go and stand again in the shower. Then there will be some more sitting to recover from that, then dressing will ensue. Again a little rest, cobble together some lunch, then a rest, then a jaunt into town beckons whilst he whiles away the afternoon watching the footy through his eyelids. More resting on the return (hopefully with a bargain or two) then, heaven, he will cook. I am fortunate in that he does the week-ends but I do the Monday to Friday stuff and that involves sitting as cooking standing is no longer an option - but so what? I can still cook, so 'ner-ner-ner-ner-ner' to the arthritis.

How do we cope? We do what we can, rest when we can, then do a little bit more. I have made alterations to what I do and how I do it to accommodate the selfish and sulky demands of the filth that lives in my body but that's it. I miss dancing, cycling, swimming, walking, wearing pretty shoes but the essential me is still here and I will not let the PsA and OA get the upper hand. I refuse to do that. They can jeer and thumb their noses at me all they want but they will not win. It takes time, sulkycat, I note you have been reading the Acceptance thread - now that thread is by far one of our better efforts on here! I re-read it from time to time, it helps to regain a perspective on this life of mine. OK, so it's not the one I want or thought I would have but it's here and I have to get on with it. You will too - you sound spirited, gutsy and as for the pink hair - get in! DD

sulkycat

Before I reply in depth, just a flying visit to say a massive THANK YOU for all these wonderful, kind replies.

Thank you x

dreamdaisy

I've just re-read my reply - what a happy girl posted that: the promise of shopping without a sighing male in tow was making me smile and what bloody happens? Daisy car dies as I have not used her enough over the past three-and-a-bit-weeks, thanks to the phacking arthritis, phacking Christmas and the phacking bad weather. Husband then gets sulky (and rightly so) as he has to sort out the battery and therefore missed the footy (who'd have a disabled wife? :roll: ) Coping? COPING? I am screaming with frustration, indignation, fury (it's also Humira night tonight which is SO NOT what I want right now but hey, so what? Arthritis has NOTHING to do with what we want) but that injection has to be done. :evil

Fifteen years in and it still bites from time to time, the unfairness, the injustice, the sheer inconvenience of stuff but you know what? It will pass, it always does, and I will regain my usual Tiggerish approach to things. We all find our own ways of coping, and you will too.

Right, it's time to go and cuddle the husband and say Thank You once more. And fetch a small glass of wine - that'll help too. DD

skezier

Hi Sulks,

I have had this bone stuff diagnosed since I was 15 and I am now 53 and it still hasn't got me .... quite..... so hang in there cus we get good times as well as the rough for a log time.

I wouldn't give in, I wouldn't have it... not sure sure I do now... I know its there cus it is beating me about a lot now a days but its impotent to test the boundaries as well as find them.

There are no real answers to how folks cope cus we all found our own way and you will as well.

I promise you that.

I am lucky I got it so young that i found a way to cope while still growing up and its held me all these years with a bit of hope still left

Hang in there cus its never as bad as you think it will be. Cris x

bubbadog

Hi Sulkycat, Your doing brill to deal with RA,OA, M.E, Angina and Digestive problems. Alot of us including me!) do loose the plot sometimes when the pain and stress tips us over the edge, but we manage to be caught by someone before we hit rock bottom! A sort of bungee support and that's why I'm so glad I joined the forum, cause if I hadn't I would have major depression problems by now!!
My days are filled with checking my laptop for e-mails, then check AbleHere.com (which is a social network site for disabled people) I have a voluntary job on there as a sort of Dear Amanda and help out new members. So that takes a good couple of hours, then cheak this site. Then I go to Twitter and cheak out whats happening on there. Then lunch time premade sandwhich or next door comes over and makes my lunch and in the aftertoon I watch some recorded stuff or watch a film. Anytime I have before my husband comes home is spent on The Sims 2 which is very addictive!
Your 100% right Dibdab (Wow cool name! I'm addicted to the sweet dibdad! And whenever I see your name a picture of a packet of dibdad comes up in my head!) Only people who suffer from a type of Arther truely understand how debilitating, extremely painful and wearing it really is.

GraceB

Sulkycat,
My partner has ME (and has had it now for 10 years) so I know only too well what you go through with this debilitating disease. Life's such a struggle with ME and it's all down to planning and balancing. My partner sees the sun, goes mad and then he pays for it the next two days (correction-we both pay for it!).
I have OA and between that and dealing with my partner's ME life's a struggle. My OA is in both ankles, both knees hips so it's a bit of a **** at times.
I focus on what I can do and forget about what I can't. I keep telling my partner to take that view but - being male (sorry chaps!) - he struggles with that concept. He's just been diagnosed with OA lower spine and is getting lots of pain from that. He now realises what it's been like for me since 1998 when I had my first diagnosis and says he cannot imagine how I cope so well.
If you haven't already got one, please investigate getting a blue badge. I know that these are being tightened up on but if your GP will support you, you may get one.
Take care of yourself, if you want to PM as someone who knows what it's like to live with ME please do do.
Grace