crash & burn

debram

Well thats the only way to describe how I feel tday. I have PSA and take methotrex (amoungst other things) started Humira -2nd inject yest.
Felt best Ive felt in ages this morning-did some cooking-nothing heavy cant lift-went out but after having a sit down later-crash-cant move /so so v tired/cant get up from a chair is impossible/cant walk or think! I realise Ive "overdone it" big time. Got to bed by climbing stairs on all fours-I feel so awful every joint aches and is on fire.
I usually rest after things like washing up-do some sit down-rest-do a bit again.
Will this EVER get any easiier!?
Have anyone had help from services like oc therapists and how to I go about seeing one? Ive heard they can help with gadjets-I have it in my hands and opening jars and tins impossible. Cutting veg-holding my glass of water is sometimes near impossible as is drying my hair and Im now a "one finger" typer !

frogmorton

Hi Deb

Occupational therapist is a great idea for you just now. Gosh yes. Here we contact our local social services and ask to be referred. They are usually lovely and helpful. Lots of stuff available to help make your life easier

In the meantime rest up and take it steady

Love

Toni xxx

stickywicket

I think you did get a bit carried away with it all, didn't you? It's easily done. However, I hope it's a sign that the humira will help if you just give it a bit more time.

As frog says, you can self-refer to an O.T. They are very good. However, for jar-opening, I bought an electric one from L*k*l*nd and I also bought an electric can opener from my local disability shop. For chopping veg I use a large bread knife and press down one the far end with my other hand. I also use it for peeling large potatoes – cut in half, slice off the end then place it flat and only downward movement of the knife (with both hands) are needed. Drying my hair? No can do. I cut it short years ago so that it could dry itself.

debram

Thanks frog- I thought I may have had to go to my GP to be referred and as thats my "second home" at the moment Im glad I can self refer to social services- My GP must be sick of the sight of me! :roll: Ill ring them Monday.

Sticky- good advice - why didnt I think of electric can opener! DOH. Ive been having trouble too as lots are ring pulls and they are impossible- like opening a tin of corned beef with my teeth! Incidentally I am using my teeth too much (even they ache!) to open things as I find a scissors hard as I have trigger thumb- but at least I have hubby to get my meds out of the packet! ( along with pull my knickers off and undress me when Im too exhausted or cant move my arms!) AAAh long gone are the days of dignity! Cutting veg will be easier now- thanks. .

Thanks both x

dreamdaisy

On bad days I don't bother with knickers. Ring pulls? You can get a gadget for a couple of quid that levers them up and open with the minimum of effort. Chopping veg? Use a board with some nails banged in to hold the veg secure or use a food processor (or hand-held electric blender with a suitable attachment) to do it for you. Why peel veg on a bad day? Scrub 'em clean and use them skin and all.

As our joints become more inflexible we have to be more flexible in our thinking. Ability-challenged humans are generally ingenious and ways round problems can be found. Have you had a look at the tips and hints thread at the top of this forum? There's a wealth of bright ideas in it.

Never believe your body when it tells you it's feeling OK - it's lying. Maybe attempt a little more when you're feeling more able but always stop when you think you can do more. Make sure you get plenty of rest today and tomorrow and I hope you feel better soon. DD

debram

Hi Dream Daisy- youve hit the nail on the head there- both with the board idea and with believing my body when it tells me Im ok. I would never have thought of nails! Yes I will read the info on this page and try it out. Thank you.
As for my body- Ive had this disease for more than 2 years and kept pushing and pushing myself - at home - in work - not knowing why I was in pain and tired and aching- Home to work- work to bed. It got to the point where I eventually had a diagnosis 2 years ago.
I used to have"good days" when I think Im "cured"- Ive tried to convince myself I can or this or that- Im getting better but yesterday was the worst.I have always tried to "fight " this disease and have taken a long time to accept I cant do things- I am forcing myself to do things and as I saw yesterday- its not worth it!. I now have "good hours"!

I dread night time- Im even more stiff than in the morning and am not sleeping. Im in so much pain and cant get comfy- I have a memory foam mattress and a bed that goe up at the back but lately I also have a job to get out and go to the loo at night too. I have to will myself up!. My GP gave me sleeping pills and sometimes they work and Ive had about 2 nights sleep but they make me more of a "zombie" than I already am.

I know PSA is a progressive disease and its hard for me but whats worse is that I dont think my family really understand. They think Im moaning all the time and I think one of my sons think Im putting it on because sometimes I cant walk and I stoop and others Im ok. Having said that I may be "taking things the wrong way" like my husband says- Im super sensitive!
xx

dreamdaisy

I'm seventeen years in and learned long ago the treachery of my body, especially when it was pepped up on meds. Life is easier now because it's constantly rubbish thanks to OA and newly-diagnosed fibromyalgia (which explained a lot of what has been going on but I couldn't be bothered to investigate, it's amazing how readily one accepts rubbish health as being par for the course). Sorry, I lost my thread - life is easier because my body no longer lies because it has nothing left to lie about.

I've had to alter the way I do things but the main thing is I can still do them. I don't expect those around me to understand how I am feeling - after all I have no idea how they are feeling. Feeling well? Having energy? What's that all about? :? I remember the last time I felt well, it was October 2001. I am looking very well at the moment, sun-browned skin, hair bleached a lovely shade of light blonde thanks to the sun but I feel utterly grim. No matter. When someone says 'You look well,' I reply 'Thank you, that's lovely to know.'

I am always forcing myself to do things, hence the pacing and doing tasks in chunks. I went without a diagnosis and therefore meds for seven years, so what I have had is too little too late. I know that the humira and meth is keeping the worst of the PsA at bay but I don't feel any true benefit. I reckon you're in with a better chance that I had with the drugs so don't frivol any boon away - still pace yourself as before but enjoy the better times as and when they turn up. They will end but they are to be treasured. DD

Tubby

I have PsA and have also crashed and burned today. Running ( well too much walking) around at work yesterday did it. Feeling your pain - literally! Hope it gets better tomorrow

debram

Dream Daisy what I like is you tell it as it is-I know its getting worse I know it will get worse Im sick of people saying it will get better-i csn accept it-it will be as it will be and I belive the meds are holding mine off too. I have joint damage in my fingers and I believe they nor my other joints would be as bad if I was put on Humira sooner.
I know its a very expensive drug and thats why the NHS got guidelines where you have to trial other drugs first. But I initially went to a private rheumi who was writing to the nhs one (once I got to see one-9 months later) and to the consultant looking after my psoriasis-for them to put me on it but to no avail. Now 19 mths on I have it.
I also had other signs prior to PSA-had Euvitis & Iritis flared regular & very painful. The hosp said-mmmh must be some inflammation somewhere but I NEVER had or was offerred tests to look for it!
I had my bosses pa ask me "what exactly is wrong" the other day-shes previously said her dad has arthritis in the knee -implying its nothing really. Fuming!
I try to be positive in the face of ignorance and hope for the best tho.Ill just smile & say Im fine from now on.

dreamdaisy

Because arthritis is so common it is trivialised by those who know very little about it - aren't they the lucky ones? Anyhoo, their turn may come.

I can't see the point in fudging any issues concerning our lives and how things are. Any form of arthritis is a progressive and degenerative condition but the rate of progression and degeneration is as individual as us. Some give up the ghost far too easily, one tiny little twinge and that's it their life as they know it has ended, others fight on for far too long because they will not be defeated, but most of us muddle along as best we can, adapting our ways and habits as we go.

I think it can be very difficult for those around us to accept and deal with what is happening to us, they feel helpless because they are. I think they say that things will get better because they are giving themselves some comfort and hope. They need that more than us. We have to deal with the reality - and it's a tough one. DD

frogmorton

Hope you made the phone-call Deb??

You might be surprised how much help the OT can suggest and just how much it can change your life

Did DD really say what I thought she said???:shock: :?

love

Toni xxx

debram

Hi guys-yes I made that call and boy do I wish id known about it sooner!
The lady on the phone was so kind-I did get upset as we spoke but she was so reassuring!
They are going to come and do a bathing assessment -(I fell out of my shower-cant get my leg up to have a bath & cant bend to wash my feet!) and give me advice plus gave me details of a shop to go to and try out gadgets!
Theres a waiting list but she said if theres a chance I could be fitted in -they will!

I slso went into a diferent disability shop and got a new stick-Ive never been so excited! i used to be excited at buying shoes but now Im excited because I have a lovely flowery stick! I had a boring black one but never felt safe as I thought it wss too short. The visit today resulted in one thats two levels higher and it took the strain off my shoulder. A nice comfortable shaped handle too!

Thanks for encouraging me to make that call!

love
Debs xx

dibdab

Hi Debs,

So glad you made that phone call, sometimes the asking for help is the hardest part isn't it?

Can I suggest you look at some of the excellent leaflets on this site about living/working with arthritis, it might give families and workmates some idea about what you are coping with- when I gave my headteacher a copy she was really grateful, and soon started offering adaptions to the workplace to make my life easier.

My rheumy nurse referred me to a specialist arthritis OT who had lots of suggestions and showed me all kinds of gadgets that made life easier- she also gave me splints and gloves to protect/support hands and wrists - so hopefully you'll get the help you need too.

Deb x

stickywicket

Well, that is good news, dibdab, and thanks for sharing it with us. I hope the OT will help and I really do believe she will.

As for the stick - I'm glad you like your new one but even more glad that it's a better height for you. That's so important. I hope it will help.

dreamdaisy

Well done to you for getting things going - sometimes it is down to us because nobody else can do it on our behalf. One of the best things about the forum is being able to dip into a wide pool of knowledge, to find things out that the professionals know but omit to tell us because they assume we know too.

A general tip for stick height, your hand should be just above the level of your hip then it's the right height. The same applies to crutches and rollator handles. Good luck with the visit and I hope they can provide things to help. DD

debram

Thanks for replys guys-thats good to know that you had splints for your hands because Ive seen people wearing them but thought they must be prescribed at hospital.
My appointment is a long way off so I hope this other visit is sooner & I get to discuss it with her as I think they would help me too.I think a bit of support for my fingers & wrist would be great-maybe it will help with the pins & needles too.
Youn are right about the stick hight & I wish Id asked advice before I went!! My stick is now just above hip hight with a slight bend in my elbow when I use it-my first one had my arm straight when I used it and was putting pressure through my elbow to my shoulder and it was below my hip so that shop was a pile of pants!
My consultant recommended a stick but I thought Id be reffered back to podiatry or somewhere for that. Trouble is we only have a small length of time in an appointment its impossible to cover everything off-I write notes but end out coming out wishing Id said this or that. A conversation easily goes off track and you end up spending more time on one subject. Also having seen the size of the waiting room -your afraid to take too much time so this forum is great!
I will look at the info on here too-now Im learning to deal with just one thing at a time & my heads out of the proverbial shed so I can take more in.
Thanks again all

Deb x

stickywicket

In the days when I wore wrist splints they were prescribed by my rheumatologist because you never saw them in shops. I don't need them now. Thanks to judicious use of the splints (only when needed and not for too long) my wrists, although now fused, have fused in the 'straight', most useful position. They don't hurt any more.

I've never been able to use a stick (because of the wrists :roll: ) but I think they should be at hip height not above it. I know you love your new one but really you should maybe take advice on it. We have to think long term.

Head in or out of the shed, Deb, there's a lot to take in at first and it's not easy. You seem to be doing OK on that front. You'll get there

debram

Sticky- I do find using a stick hard too - when I spoke to my consultant she suggested one as my right hip is bad and Im walking like a "penguin". She didnt offer to refer me for advice on it so I just went to a disabled shop- that was my first mistake as I had one too short.
As I have it in my elbows and shoulder it was making that worse. I went into another disabled shop and she measured me--its just to help me get about on days I cant manage and it has helped when I get up out of a chair.I used to lean on something until I straightened up and stood still until I could get my feet going. I hope to see an occupational therapist soon too so she will point me in the right direction.

My consultant said this is gelling- its particularly embarassing when I go for a meal (rare ocassion though) Particularly when I have to visit the loo I have to get up- using the table for support- stand behind the chair until I get steady- normally a few mins- them I limp off. My husbands getting good at chatting to me while I stand so it doesnt look so odd! Ive gotten over my embarassment tho! Im now using disabled toilets too as I used to walk past them thinking theyre not for me but now Ive accepted it Im ok.

I joke about how pretty it is but dont really care what it looks like- Its just nice to have something that gives me confidence to go out. Its a challenge to use though and Ive found other people inconsiderate as they push past you etc. My hand still aches but as long as I have short breaks Ive been ok.

I chose one with a shaped hand rest so I dont have to "grab" it-.
Im waiting to go back to the podiatrist and hope they can help- theyve already made me shoe inserts & given me muscle stretching exercises. My foot arch is affected and its now flat and my toes are doing the "spok" hand symbol of spreading- Theyve spread so far I now wear wide shoes-
Have to admit though its hard finding nice shoes. If anyone has any shop/internet supplier they use- Id love ideas. Im told no more than 1 inch heel and try for a bottom thats like a sports shoe- rocker type. Ive got a clarks pair- in boring black so Ill use my glue gun and "bling" them up I think!-( when my hands are behaving & I can squeeze the thing!)

Im trying to remain positive- Im 51 and this is happening too fast- Ive already had a tune today- I know Im not alone though (sadly) as I have this forum & you guys are great. I think its so beneficial to dip in & out of forums - even if i dont comment I pick up some really useful info.
Thanks

Love Deb xx

stickywicket

I think the OT will definitely be your best bet. There are other options eg a gutter frame on which you lean your entire forearm but it's hardly suitable for a restaurant :roll: I do the party stand too - turn round square to the table, lean my forearm on it and lever myself up. By the time I'm ready to lurch to the loo I usually have an enthralled audience Mind you, it looks even worse in a pub

Of course you qualify for the disabled loo. Half the time, I find I'm waiting for a couple of very athletic-looking girls to emerge. Get a RADAR key too though the quality/cleanliness varies.

Sorry, can't help with shoes other than surgical ones I think I was in my twenties when I was last able to walk in a pair I'd bought.