Need a pick me up, any ideas??

suzygirl

Hello all, I am finding things really hard at the moment. I am usually a positive, resilient person, however lately I am becoming increasingly fed up with it all, and dare I say it . . . irritable. :shock:

It is just really grinding me down, the sheer relentlessness of it all. I just seem to be being diagnosed with more and more conditions. I have gone from being extremely healthy and active to being housebound a lot of the time. The isolation is not ideal, but find getting out and about so difficult that I find being at home easier.

I have been to the gp and she said she would get the rheumy to refer me for hydrotherapy and OT for help with mobility. Of course I have heard nothing, as I expected. It is all waiting, waiting and I have got so disillusioned with it all. Yep, got it bad. :sad:

So, before I bore myself anymore with my negativity, has anyone got any tips that helps to perk themselves up?? This is just so not how I wanted things to be. I have coped so well up until now, and just seem to have given up really. If I think about the future, I panic. I tell myself one day at a time, and still have the vain hope of a miracle med that will give me my life back!! :roll:

Sorry to be so miserable, but any tips would be appreciated.

Thanks

constable

Oh Suzygirl,

I am so sorry that you are feeling so low, pain does drain you completely and when things seem to have stopped it must be awful. I can well understand the way you are feeling. Maybe you should book another appointment with your doc, express to them how this is affecting you now. The only thing I can do is to send you really big hugs and to let you know that I thinking of you.

Karen xx

fudge

Hello suzygirl, sorry you are so down at the moment, I can't offer any helpful pick-me-up's - if you move along a bit I will come sit down beside you though :roll:

All this beautiful sunny weather we are having is wonderful - it is being stuck at home that niggles, the want to be out there and knowing you can't just seems to lower moral even further - gets me really frustrated and niggly.

Do you sew or knit - have hobbies of any kind? That crawled out of me, who wants to sit doing that when the sun is beckoning :roll:

Sorry not been any help, just wanted to say you are not alone and send some empathy vibes, if I do get inspiration will be right back, put your thinking cap on as well.

.........fudge.........

suzygirl

Karen and Fudge, thanks for showing understanding to me. It is a relief, to know someone identifies with how i feel and that I am not alone.

Fudge, I have moved up so you can sit next tome!!

I can't sit in the sun as it sets off a flare for me and causes rashes, exhaustion, weakness and a whole host of lovely symptoms. I can't do a lot at the moment as in so much pain. Don't quite know where to put myself, just can't get comfortable.

I really appreciate your thoughts, hope you both have had a good day.

ironic

Hi Suzy,
Aw flower I am sorry you are so down at the moment. Could you ring up and find out how your appointments are coming on?
Do you like reading? I can lose myself in a book. I sometimes sit and make cake mixes, may be your OH could pop them in the oven for you. I am trying to identify birds in my garden this year but I have found out there three types of sparrow!!! Nothing is easy is it?
It is so difficult when you feel trapped in four walls. Can you go to a garden centre or park and use a wheel chair or hire a scooter?
Sorry I am not sure what to say to you for the best. But I just wanted to send you a hug.
Lv, Ix

Jo90

Hi Suzy
Sorry to read this, I felt in just the same position last year. I can give a few suggestions - silly DVDs - Father Ted never fails to lift my spirits, try and put together a list of uplifting pieces of music (Take That, Elbow, KC & the Sunshine Band, Earth Wind anf Fire work for me - yes - I'm an old f@rt!) Or, failing that, perhaps I could introduce you to two good friends of mine - Mr Bacardi and Mrs Coke

Hope you are keeping your pecker up
Jo

suzygirl

Lynn, Jo and Ironic, thank you so much for your replies. It is much appreciated and made me smile. You all have such great replies, they made me laugh!!

Jo, I would love to introduce you to Mr JD and Mrs ice!!!! Extremely naughty, but a highly efficient pain killer (lol)

Collywobble, your filing system sounds like my 2 boxes in the kitchen. Very pretty boxes to hide the mess inside!! :shock:

I do read, watch the birds and garden centre visit as and when I can. Amazing you all have the same pick me ups as I usually have. I have also spoke to the gp who thinks it would be a miracle if I didnt feel the way I do with all I have going on.

I am just taking one day at a time, at the moment. Its all I can do. Trying to type over the head of my kitten who seems to think she needs to see the laptop screen more than I do!! She is 14 weeks old and great company, which is the reason I got her. Wonder if I have spoilt her as she doesn't like to be alone, she will only go in the garden if someone is with her.

Anyway, off to the dentist for a filling, caused by the stupid dry mouth this pestilence has inflicted on me. The fun never ends

Have a great day all and thanks again for your support.

woodbon

Hello, Firstly, I'm sorry to hear how bad your feeling at the moment. I think I'd get on to the GP again about the hydro or some other further treatment. If you can arrange something, I think it may make you feel better in yourself, as you will have managed to fix something up yourself. I know that would give me a boost, as I sometimes tend to sink into myself and get very depressed. Do you like reading? Maybe you can find a book that is light and funny, I tend to go for things I've read before and enjoyed, as I don't need to think too much if I'm feeling down. Or I may lie on the bed for half an hour, no longer, not trying to sleep, just resting and letting the joints sort of streach out! But thats me maybe you like something else.
Love Sue
Also, I tell myself when I'm down that the depression will go and I will be able to cope. That's hard, and I admit not always possible, but it is worth a try. I hope you soon start to feel a bit better and can enjoy life a bit more. The pain is such a depressing thing,

carola

One of the best things to do is what you have done already .... posting a thread on this site. It shows that you are not going to let your current condition beat you down.
Just over a year ago I was struck with SLE (a form of lupus) and polyarthritis. I had to give up my career and my busy social life. I lost alot of people I thought were friends when I stayed in my cave too sore to go out and lost my confidence and self worth. HOWEVER, family members I used to only have contact with at weddings and funerals started contacting me and that touched my heart. Also, my boyfriend's friends started popping into flat alot more and showed me just who my friends are.
I think we need to wallow a bit almost like mourning our life before all this and then when the time is right we dust ourselves off and begin again. Once I got some of the symptoms under control with meds then I was able to dust off sewing machine and start lots of projects (and finish none!) and got a puppy to reward myself for thinking positive again.
I am now at the stage of trying to address my meds as some of them are causing problems and looking at a healthy way of life - nutrition and yoga are my current ones.
By typing the above I am just trying to show you that I have felt like I had hit rock bottom but managed to bounce right up like a power ball.
Stress makes everything worse so while you are getting to grips with illness and your reaction to it don't give yourself more stress. If you need to sleep then sleep, housework can wait and if you feel you can go out for dinner or a drink then try it .... if you get too tired or sore just go home. At least you tried.
PS: I too cannot go out in the sunshine so I ensure I take Calcium and Vitamin D. I take it in liquid form as body absorbs better I am told.
Also, I always put my face on and do my hair every day. On days of real pain it would take hours however in the end it helped me feel like my normal self.
You keep soldiering on and smiling Girl - it'll get better.
Carol x

barbara12

Hi Suzy
The others have said it all, but I just want to say that i am another that really understands what you are going through, the only thing that works for me is when my grandchildren walk through the door
You take care of yourself, and I really do hope you feel better very soon.
Love
Barbara x

skezier

Hi Suzy,

Oh sorry your not feeling too positive at the mo. I think its very hard to stay up all the time i really do but you asked for ideas on a pick me up and what I do is try and remember in your head your free.

Puffin (haven't seen Puffin for ages and hope if you look in your ok? ) reminded me a while back about the bubble... Suzy get your self a bubble... You go in it and nothing can touch you Its all safe and peaceful in there.

I might spend too much time in mine

Like the others you can get lost in a good book, drift off somewhere much better and pain free, hit the music (I love the trance and dance stuff and it does shake me out of a wallow) Suzy anything to distract your inner self from what your body is doing helps.

Leaving you a buckets of strength, stamina and hopes flower. (((( )))) and more lift up vibes. Cris xx

julie47

Hi suzy
I am sorry that you have been feeling so low and I do
hope you feel a little better today and that you have been able to do some of the suggestions the others have given you.I do alot of those suggestions myself too.

I haven't any different suggestions but I liked the bubble suggestion and I am now going to look at my conservatory as a bubble....

I have got a new paint pad and i am going to try painting again...will be a challenge now with these hands.

Take care
and keep your chin up, we are all behind you.
Juliepf x

suzygirl

Cris, Barbara, Carol and Sue and Julie, your replies touched my heart and made me smile. Thank you for sharing and showing that I am not alone. It seems we are all going through it and that a lot of us use the same tips.

I too try to do my hair and make up and avoid the temptation to wear scruffs all the time!! :shock: I do find that helps me feel better, almost a positive reinforcement.

I love my books but am reading gritty ones at the moment, to match my mood!! Not feeling like happy ever afters, lately.

I play silly games online to stop me thinking too much. I am actually starting to wonder if it is a flare or maybe a med that is causing me to feel so bad. Just been out in the car and had a panic attack whilst driving, wondering if the sun is affecting me more than usual. I too have SLE and polyarthritis and a few others, kind of an overlap. It doesn't seem to want to make its mind up what it is. :???:

Anyway the sun has strange effects on me causing neuro symptoms etc, and it is quite strong at the moment and my rashes are worse than usual so am wondering. As it is so unlike me to feel this way. Its scaring me actually. There I have said on here what I am unable to admit to anyone. Things just aren't right.
I really like the bubble idea, I may never come out!!!

Will have to try and chase up my rheumy appt, I think. Thank you so much everyone for support, it helps more than you know.

carola

Remember that the meds can cause reaction to sunlight too - depending on what you are on.
In March 2010 I had to stop work, in July 2010 rediagnosed with SLE and PolyArthritis and by that time was so bad my boyfriend had to dress me, help me to the loo etc.
One year on I have cut out diclofenac & tramadol completely. Reduced my Steriods/Pred. to 4mg daily, still on meth and hydroxy but planning to come off them in the near future. I know that I can never return to my career however starting my own company now. I need the flexibility of being able to take a day off or fall asleep whenever the sle and/or meds dictate.
I have had huge battles trying to get Rheumy to work with me and not just treat us all the same.
I now actually look forward to bedtime as no longer the nightmare it used to be.
I prove that it can get better. It justs takes us all different ways and different times.
I strongly believe that the trigger for my SLE was a combination of stress and poor lifestyle and therefore addressing this
To chase rheumy appointment try doing (if you haven't already) doing what I do and contacting the rheumy nurse and pouring heart out to them - this always works for me and they manage to squeeze and early appointment if I needed it.
Sending a bucket of positive, healing and smiling thoughts to you.
Carol x

skezier

Hi Suzy,

Oh that sounds like a med thing. What meds are you one flower?

I had problems getting to 300 2x a day on the pregabs and they caused me huge panic attacks... but that's also cus I had to have one of my sheep put down so my mind kept telling em I would find them all dead.... really horrible but thankfully it passed.

When you flare well when i get a boost of the low grade flare that never goes, it seems to make me more scared. I think its cus I feel vulnerable cus I feel so wobbly and unsure about where the floor is....

Maybe that's also something your subconsciously doing?

Suzy just remember this will all pass and you will be back to normal you again soon. no one can stay up all the time, sadly. leaving you some more ((((( ))))) and borrow some of my strength cus I have a couple of spare buckets. Cris xx

stickywicket

Hi Suzygirl,

If the pain doesn’t get you, the sheer relentless monotony does, doesn’t it? Combine the two and we have what I believe is technically called ‘a real shi##y situation’. For what it’s worth, here’s how I tend to tackle this kind of thing.

For a start I’d accept that hydrotherapy etc usually takes a longish time so no point in hoping there’ll be a letter in every post.

Staying at home is, indeed, easier and more comfortable but it does make me feel bored out of my skull and consequently miserable, useless and annoyed with myself. So I try to find some things I can do/places I can go where the sense of ‘It mightn’t be much but at least I did it’ will balance the pain. Or at least nearly do so.

If that’s not an option I try to do something that I really don’t want to do even though it won’t be at all painful – go through the bank statement, tidy a drawer, make that phone call I didn’t want to make – just for the sense of achievement and relief.

After my latest op I discovered, to my amazement, that the mild concentration needed for playing computer games (which I never normally do) meant I could postpone painkillers for longer.

Phoning/emailing a friend is always good. I don’t have to list my woes. Laughter is the best medicine.

When the pain is so bad I can’t distinguish between the physical and the emotional – Leonard Cohen for a good wallow followed by Chopin for a soothing massage then finish with Mozart for a boot up the rear.

Or, we could always try the magic wand. Mine was a cheapo one that never worked but maybe you could find a better model. If so, can I borrow it when you’ve finished with it?

Final word – don’t think about the future. I’ve had this thing for 50 years. At times the pain has been an absolute s*d but I wouldn’t have missed those years for anything.

skezier

Sorry Suzy quick hijack xx

Hey Sticky nice to see you cus I was wondering where you had got to. hope all's is okish? ((( ))) and a hope flower. Cris xx

dreamdaisy

No matter how determined, how resilient, how positive, how up-beat and cheerful we try to be, maintaining that front is sometimes a damn sight harder than delaing with the pesky illnesses we are harbouring in our manky bodies. I don't think that one can deliberately alter one's mood - you can try to divert your attention, try to focus on summat else, but if the blues are there and want to come out, they will come out and it is best to let them. Your life has changed (indeed is changing) at a rate of knots, very unpleasant knots at that to boot, and that is a challenge in itself.

Be kind to yourself. Come and talk to us, we will listen and understand, pass on whatever tips we have but, fundamentally, I think you have to go with the emotional flow on this one: fighting it is tiring, coping with it is draining, both emotionally and physically, and sometimes it is nice to just stop and let it all wash over one. There is nothing wrong with a quick dip into the pool of self-pity, we will soon haul you out if we think you are staying too long! Take care and I wish you well. DD (who is sopping wet from her own pool!)

suzygirl

Thanks guys, I can really identify with what you are saying. I have just chased my rheumy appt, and it is on FRiday apparently. :shock: It appears it is a good job I phoned!!

It is with the nurse and not the rheumy and now I won't have time to get my bloods checked before the appt! I told her last time that I felt the sulfa was making me worse, but she said it was a flare. My hair is falling out in huge clumps and my rashes are here with a vengeance etc etc Still, I will mention it and the hydrotherapy and the OT referral for mobility help and wrist supports. Lets hope I get somewhere. I feel a bit abandoned really as I am now only seen by rheumy nurse as on sulfa and yet I still don't have a full diagnosis. Shall have to discuss the Sjorgens dx with her as well. Boy, she is going to love me!!

Lots to think about, off to make my list!!!

fudge

Hello Suzygirl, just looking in to see how you are today.
Good you are getting in to see someone as you are feeling so down just now, bet picking up a pen to make a list was not quite what you had in mind when started the thread ' Need a pick me up ' :roll:

I do hope you get some positive feedback and a plan of action to help ease life for you, we are all so different in what meds and treatment our bodies are able to respond to and tolerate, case of trial and error I think, and them that do the prescribing must have their fingers permanently crossed that they are able to help and bring relief - if not cure.

Good luck with your list, and the list of things you forgot :!:
In theory I have my fingers crossed for a good consultation for you on Friday - can't do the real thing you see

......fudge.......

suzygirl

Thanks Fudge for your concern. I take it I amnot the only one who forgets things on the list, usually the most important thing!! :???:

It has made me feel better as I have something to aim for. Just hope I am not too disappointed when I get there!!

Jo90

Minor hijack of the thread - but I wish I had come across you all just over a year ago - such great support and useful advice. I was going mad on my own and not knowing who to turn to for advice. Lots of excellent tips here - what brilliant sharing.

Hope you feel a bit better Suzy, if you are of a mind to use a fraction of these tips you will start to mend. Take care.
Jo

suzygirl

All hijacks welcome!!! Although Jo, I thought your post fitted in well, I am glad you find the forum and its threads useful.

Collywobble, actually my rheumy nurse is really easy to talk to, she actually listens and I am not so intimidated!!!!!

Thanks to everyone. x

skezier

Hi Suzy,

I think if your hair i coming out like that and your covered in a rash them maybe you are reacting to the sulfa? When do you see the nurse and see if she can get the rumo to have a quick look at you cus something isn't right there.

You hang in there and will be in your pocket when you got to the nurse. Hopefully she will be able to help you. (((( )))) and a hope your feeling a bit lighter. Cris xx

tillytop

Evening Suzygirl!

Just to add my "pearls of wisdom" to the brilliant replies already posted.

Last summer I was particularly poorly and spent weeks at a time sitting in my "corner" on the sofa, unable to go outside. I was often unable to read because of problems with my eyes and I got to the point where I thought if I watched any more daytime telly I would go stark staring bonkers. What I did discover though was the pleasure of listening to the radio - takes very little effort and can be very soothing I found, particularly "talking" type programmes - plays, current affairs etc. Not only did I hear some very interesting programmes, but it gave me something of interest to talk to my husband about when he got home. Audiobooks are also good company I find if reading is difficult cos you can't concentrate and my husband bought me some DVD box sets of things I had enjoyed. All those things were really helpful when I was unable to do much at all.

Also, I went through a particularly "down" patch a few months ago and i just wasn't coping at all well. Like someone else suggested I think, I made a weekly list of all the things I could do, both chores and pleasurable things and each day I aimed to do at least some of them. Then, at the end of the day I could cross them off with a sense of achievement. The sort of things on my list were - pick a book to read (any book) and read a chapter. Go through the huge pile of magazines I have hoarded and decide which ones to keep and which ones to recycle (which meant I spent a few happy hours reading through them) . Tackle one small household chore (which helped me feel I was at least contributing something to the running of the house). I also identified tv and radio programmes I wanted to listen to in advance and added those to my list which meant I had something to focus on at a particular time of the day.

Hope some of that is helpful.

Really good luck with your appt tomorrow. Will be thinking of you.

Love Tilly xxx

fudge

Hello suzygirl, well I hope you are all set for tomorrow, and feeling confident about a good out come. Don't hold back on how bad you have been feeling and how low it has taken you.

The whole structure of our daily lives is affected by poor health, like ripples on a pond when a stone is thrown in, then more stones follow.

Really hope you get some positive help suzy .

fudge.