How do you cope?

louisabone

I'm really struggling, i cry alot, its not the pain its frustration... ive been told i need to have a positive mental attitude (from someone who compaired not being able to do anything and having constant hand pains to having an upset stomach)

but I guess in a way she is right ive been hoping this isnt some form of arthritis but my gut says it is and i think i need to accept this might be somethin for keeps and if it goes away and never comes back after ive accepted it... BRILLIANT lol

This might seem like an odd post but you lot really seem to be coping amazingly i hope at some point you were all as bad as me and miserable lol iykwim
and its really hurting to type this so please help lol dont let it all be for nothing

so how do you cope esp those with problems with there hands how can i instead of doing it normally and struggling or not being able to do it at all and finding some way to adapt to be able to do it myself
If i list what i think of from the top of my head any adaptablity ideas would be fab, my husband goes away in may for a weekend and i need to be able to do everything or i have to go and spend the weekend with my inlaws while he gets to go see judas preist lol

(if i take painkillers if i do any of the following things it makes it hurt so much the painkillers stop working so just doing it when drugged up doesnt help)

I might need to add things later as i am forgetful lol

Door handles openening them
Doing up fiddly clothing bits (buttons and esp bra straps im a 38FF so bra less not an option)
Getting milk out the fridge (cold issue)
brushing my hair
picking things up
doing up kids poppers
Locking the door
Cutting food (This is pressure too when i put pressure on the knife it hurts more)
Knitting... anyway i can knit?!?

tillytop

Hello Louisa and welcome to the forum.

One of our oft used phrases here is "sorry you have had to find us, but glad you have" because so many of us (me included) have found the forum a great source of support and made us feel less alone. I can totally understand your frustration Louisa and I know that others will be able to do so too. As for the "just look on the bright side" type comments from people who don't really understand - that just adds to the frustration I reckon! Certainly, a positive attitude might be helpful, if/when we can muster one but as we all know that's not always possible. Please be reassured that you are not alone in struggling.

Trying to be practical for a minute here - You say you think you may have some form of arthritis so am I right in thinking you haven't had any proper investigations as to the type of arthritis it might be? I ask this because I find it easier to cope with something when I know what I am coping with, if that makes sense. And if you are able to get a proper diagnosis (not always easy I know) you will know what help is available to you. So, apart from the actual practical issues you mention, I think your first step has to be to find out what is going on so that you can hopefully get the medical help you need to manage things as best you can. It may be that you have already done this but I wasn't sure from your post.

AS to the practical aspects of trying to do things, there are aids available to help with a lot of things - like "grabbers" for picking things up without bending down, long handled hair brushes to make that task easier, and key "grippers" which can help with fiddly keys. If you have a local "living aids" shop, they would be able to advise, or I am sure you can find many of these things on somewhere like Amazon. Hopefully though once you know a bit more about what's going on, you could be referred to a physio or occupational therapist who would be able to advise you on these kinds of things.

I know that others will be along soon with good advice Louisa.

We are a friendly bunch here and you will be made very welcome.

Tillyxxx

dreamdaisy

How do we cope? Because we have to. Over the years I have altered how I do things (why shut doors? I leave 'em open, that saves the whole handle thing) I now cook sitting down, iron sitting down (I only do my husband's stuff now), I pace myself with food preparation, I've replaced perfectly good household equipment with lighter/fatter handled things and gadgets, I've added tags to purse, handbags and clothing zips - as my arthritis has progressed so I have adapted. I take it that your legs are unaffected? Mine aren't, hence all the sitting! My general rule of thumb now is 'If it hurts, do less of it and rest more.' I am fifteen years into this and more affected than you but I reckon it's a rule that helps at any level of affliction.

Everyone is different in how they are affected, which joints are affected and by what forms and it takes time to develop your own strategies and coping mechanisms. Your friend is right - a positive mental attitude makes all the difference - and don't expect those without our sorts of troubles to understand what our lives are like. I dread to think what stupid things I said to poorly people before I aquired my arthritis. You are in the very early days as yet, and don't know what is wrong (as yet). A pain diary is worth keeping as through that you may discover what helps or exacerbates matters, what may trigger a flare of pain, also monitor your tiredness levels as that too could be a factor. GPs are not that well-informed about auto-immune type arthritis (mine is quite happy to leave that side of things to my hospital consultant) but she does what she can for my osteo-arthritis, as that is under a GP's remit. Diagnosis can take a while so please be patient as you can - not easy, I know, but impatience does not make things happen any faster, believe you me! DD

suzygirl

Hi and welcome. We all have cried out of sheer frustration. It is hard to accept we can no longer do things. If you suffer from raynauds (cold issues) then wear gloves to get things in and out of fridge/freezer. The raynauds assocaiation also supplie a gadget to help lock/unlock doors.

Ask for a referral to Occupational Therapy, they will help adapt your home to aid you and give you tips on how to manage. They are really good.

Talk to your gp and rheumy about how bad things are, they need to know so they can help you. Once your meds are sorted things should get better for you.

Taking the painkillers reguarly, helps to keep on top of the pain.

Otherwise, this forum helps keep me sane. Well saneish!!!!!!

bounce

Hi there Louisa,

Your post has struck a few nerves with me, as I am and have been in the same situation as you.

As you say about crying with frustration, it can take a long time to get over the "mental" barriers as you realise that you cant do what you used to do as easily and quickly as before. I say go ahead and cry as it helps to get it out of your system for a bit and then when you have calmed down from the crying you can think a bit more clearly.

with the problems with the hands you can come up with some inventive ways to adjust to your "new" hands so to speak, it doesnt come overnight, its a case of trial and error, and yes at times the trying will make your hands hurt more, but that is part of the learning curve.

These are the things which I have found helps, they might help you, they might not, but you can always try them out and adjust them accordingly.
Door handles opening, I use my elbow to open the door a bit, and my foot does the rest.

fiddly clothing bits, I wear a bra with no fastenings, just slip it over my head, but im a smaller bust then you so that one might not work.
buttons, go for the bigger buttons you can find on clothing, it makes it easier to mess with them, or use zips with a keyring to help pull zip up.

getting milk out of fridge, I have a can ring puller and I have put that on some ribbon, then you hook it through the milk bottle handle and carry it to the worktop, I do that when my hands decide they dont want to grip anything like they do at times.

brushing hair, I tend to go for a short hairstyle so that I can run my better hand through it and it all falls into place or get a hairbrush with a nice big chunky handle.

Picking things up, I use a grasper that you operate with one hand, and it can pick up even tiny fiddley little things.

doing up kids poppers, sorry I cant help with that one, no kids and I dont have anything with a popper on.

Locking the door, you can buy an attachment that you put onto the top of the key, and that really helps.

Cutting food, you can buy knives etc that have really chunky handles and you just use the hand for guiding and your arm muscles do the rest.

Knitting. that is easy for some, if you knit go for thicker needles and wool, like aran or chunky wool, you could have problems with the smaller needles and thinner wool.

I hope this helps, I had to go through a lot of what you are, so I hope any of the tips I have put in can do the trick or go someway towards it.

I will start looking up places where I have found some of the items and will pm you them in a couple of days if you are interested.

All the best

Jules

dreamdaisy

I forgot to say we've all felt how you are feeling, and every now and again the hopelessness and frustration of it all hits again. I call it the arthritis roller-coaster. :roll: I plunged last week thanks to a flare of the PsA, but I'm struggling back up now thanks to the wonderful support I have received on here, the drugs and trying to be as positive as possible. Today is a good day as I have actually managed to put on my knickers! Reeeeeeesult! DD

valval

hi welcome as others have said it is so normal to feel this way it makes you so scared of the future but with the right meds and time (to get your head around it) life is so much better my hands are so much stronger i do not trip and fall like i used to i have bad weeks but also good ones i over do it quite often but with the help of all these good people have got to a stage where the future does not scare me to death i know it has ups and downs but with exercise (gentle when no swelling) healthy diet and lots of help you get there i still work 4 hours a day and others manage full time life is not over it might be different but it well worth having good luck val

louisabone

I blummin re-replied to this i know i did its hard enough to type without having to do it twice lol

The woman who told me to have a pma is currently moaning about an infected uvula so im even more miffed atm

Tilly ive seen gp i have a blood test booked but im going back before then because its gotten worse and the wait for results isnt going to help as my worst hand has gone very odd (it now sits like im crossing my fingers and reminds me its worse then last night so i need a new picture) im going to start a blog to keep record so i can print and take with me if i need
but my dr was very much if its not RA she hasnt got a clue what it could be lol so i think i am going to push to be reffered to rhumy while waiting anyway

I cant belive i didnt think of elbows opening doors :oops: when ive had kids in arms ive used elbows feet face to open them before

I wouldnt be able to use a grabber as to use one would cause alot of pain in my not as bad hand (both hurt ones just worse which is the one that started first)

and i need the support of a proper bra or my boobs become a trip hazzard lol

im thinking of a hair cut but i think thats for one which is for when i know for sure things as i look stupid with anything shorter then my shoulder lol

and DD wooo!!! for knicker victory!!! i can put mine on but not socks or bra lol

Thinking logically rather then wasting my painkillers taking them then doing things im going to get dressed THEN take painkillers so if painkillers dont stop it hurting when i do things and its going to hurt anyway why make it not hurt before i do it instead of stopping it afterwards

dreamdaisy

I couldn't manage the knickers as my legs were too troublesome last week - I have 38 affected joints, mostly the lower ones but the hands, wrist and elbows are becoming more of a problem. Luckily I am used to being in pain so I just metaphorically roll my eyes before embarking on summat that I know will give some extra. Pain relief is of limited use, I guess my cocodamol relieve about 20% of it, but that is enough to enable me to get on with things. I have much stronger pills available but I ration those as I know there will be times when I do need to feel a real benefit. Some find that heat helps their hands - wax baths for example - while others find cold better. Quite a few on here wear Isotoner gloves which I believe are specially designed for arthritic hands. My mum bought me some neoprene fingerless mittens but I can't stand wearing them, they make me too clumsy.

Last week I was taking two cocos on waking up, then waiting for about 45 minutes before I even tried getting up: I then maintained the intake in a way that suits me, that helped me to stay ahead of the pain. I reckon it's better to try and stop the trouble getting worse rather than trying to sort it when it has. DD

emsjane

Hi Louisa,

I really feel for you!! I know there are a lot of people on the forum in the same situation as yourself.

I am probably not as bad as some people on here, but i can understand some of the problems you are having!

Have you got one of those flat rubbery things, you can get them in Lakeland, mine looks like a purple sunflower. You use them to wrap around things like jam jar lids, to open them, it really helps me. It may help you to open doors, locking doors and cutting things up! Also, if you find heat helps, then i do recommend the wax bath!

Also, it is important to learn to pace yourself and to take your time to do things. I have had to learn to slow down so much and to do things more slowly and carefully so as not to push my joints to much and i find that they arn't in as much pain if i take my time! Resting inbetween doing housework etc, is really beneficial. I don't get as much done as i used to, i just do alittle every day and i find i cope much better then.

Don't do unneccessary things! Really have a think about what corners you can cut and what things you do that you really don't have to do!

With regards to your bra, i have the same size bust as you and i couldn't go without a bra either! When i put mine on, i do it up at the front around my waist, slowly turn it around to the front, then i pull up the cups so that they are over my boobs, then lastly i pull the straps up over my shoulders, i find that that way im not having to pull on the straps too much, it does still hurt to put my bra on, but that has made it a little less painful!!!

You will find ways that work for you over time and it is very FRUSTRATING!!! We are all the same on here and we can all sympathise, you are not alone!!

Take care, i hope some of the things ive said help

bounce

I love your reply Louisa, you know you are not alone in all of this, and with the different replies, you are getting your sense of humour back.

You will soon find answers to more of the problems you already face and will in the future face, but what I love about this forum is that you can ask any question you like and you get so many ideas back.

I hope you soon get diagnosed properly, and that you will get the right treatment to help.

and if you feel low at times, there is always somebody on here with a wicked sense of humour to make you smile again.

just think you are now in a big family with this forum, unfortunately its an arthur forum, but I have found out everyone is brilliant on here, they help you so much.

best wishes

Jules

hileena111

Hi
Welcome to the forum.......I dont have problems with my hands so cant really help with that.....but loads of people can.
Have you seen the thread at the top of the forum page. "Simple ideas for making life easy" or something similar...sorry :roll:
My problem is mobility of lack of it. :roll:
You'll find if it is RA the hospital will deal with it but if its OA the GP will deal with it. {generally speaking}
You've got loads of advice there about wax baths for your hands, heat...pacing yourself. Once you find out exactly what you have then you can go to an Occupational therapist. In our area you can self refer.
They have loads of gadgets for hands......seem to be very few for us with mobility problems
Keep us updated please.....when pain allows
Love
Hileena

louisabone

I had a convosation with my aunty today (she has RA as does it turns out every female on my dad's side except my nan whos mother gave her cod liver oil daily from a young age weither that really stopped it or conicidene dunno but she belives that the CLO did it)

she basicly said the same things though you get used to it, and the pain and limitations

I dunno about my sense of humour being back i feel a bit like laugh or cry kinda thing lol but laughing scares people more then crying so its always more fun lol

I need to learn to do one thing at a time for a start

im going back to the gp tomorrow i need something else for pain co-cod work for 30min to 1hr and then ive got 3 hours of pain and then my hand goes all funny too

my husband doesnt mind helping me dress at the moment (extra groping time lol) and he is starting to be better atbrushing my hair lol (first time it was as painful as doing it myself except it was my head hurting not my hand lol)