is this the way its going to be??

psyart

Hi everyone - not written for a while - have had 2 assignments to do for my Fd - one has 5000 words - i can write some rubbish!!!!! anyway - i will get to the point!!! :oops: :oops:

i am having trouble getting up in the mornings!!!! some of you good peeps might remember that I finally went doctors and also saw my RN, who both said I had depression - which I finally agreed with!! I have been on mild anti-depressants for nearly 2 months now, they also gave me meds for sleeping, which has helped as was not sleeping all night due to pain!! But the mornings are hard!! 2 months ago i felt that i had lost all my positive attitude to life, but that is back, but only once i get up and get moving??? lying in bed this morning, it hit me - i feel that every day is a struggle and as i dont really know what will happen during the day - eg fatigue, pain, etc, then if feels like i am struggling to get up to face the world??? is this making sense?? :oops: i have not had an easy life, i dont want sympathy, as i can normally say ok, **** happens but on we go again, but at the moment i am finding it hard to pick myself up mentally and cope and move on - wheather its slowly or not!!!!!! Even on days when we have had sun shine, I find it hard to get up!! sometimes i have been in bed until midday :oops: No its not really pain or major stiffness!! i get that first thing, but once the pain killers have kicked in, i am not too bad!!! i have just lost i suppose you could say - hope in my life??!!!! please can anyone tell me if they feel this?? No i dont feel suicidal, but this is the only way i seem to be able to explain it!!! i dont sit and cry, i do feel better than i did a few months ago, this seems to have crept up on me?? :oops:

a very confussed Louise xx

dreamdaisy

Every single, bloody thing is a struggle, and has been since 2002. DD

psyart

dreamdaisy wrote:

Every single, bloody thing is a struggle, and has been since 2002. DD

i'm sorry DD. ((((hug)))) for you. do you think I am expecting too much????? is that what my body is saying - that this is the way its going to be??? i suppose after over a year of bad side effects from methx, issues with old job, some doctors that are not sure what to tell you, i was hoping?????
louise xx

dreamdaisy

I started PA in 1997, aged 38, but nobody knew what it was. By 1999 I was using a walking stick and continually tired. By the time things were in motion it was 2001 and my left knee was over two feet in circumference. I've been on crutches since 2002, the right knee joined in in 2003, now its everywhere apart from my hips and my spine. I suspect that is just a matter of time.

The drugs don't do a whole lot, arthritis cannot be cured. I have been on a rapid decline since November and there's no prospect of an upturn. Why would there be? Arthritis cannot be cured, it's no use fudging round the issue.

I have a totally different life to what it used to be. So what? In the grand scheme of things my life counts as nought. Very few people have the life they planned or thought would happen. This is my lot, so be it, get on with it. Arthritis has taken much away, and every now and again it amuses itself by taking something else. It has taught me, in return, a doggedness I did not know I had. I do not fear old age, I'm living it already. DD

theresa4

Me too Louise(())

I had a good cry this morning feel pathetic and useless and in much pain. (told my hubby if I was a horse they would have shot me already he just says youre not a horse )

Every morning I dread having to put my feet to the floor I never know if they will be ok, agony or collapse, I never know if I will spend a day on the sofa, in bed or manage to hobble around.
I have a grandchild to look forward to but soemtimes that just fills me with dread as I am so useless. Im not depressed just seriously frustrated with my life the only time I get relief from feeling this way is after my depo steroid for 4-6 weeks when I am nearly pain free and can do things daily.

I get up daily as I have a dog who never asked me to buy him (it was 1 year into RA and I thought I would get better not worse). My hubby holds me up while we walk him and on days that are really bad my son takes him for me.
I am glad I got him because he makes me feel totally responsible and I have to get up and see to him. Even if thats all I manage for the day.
I have my raised garden thanks to my hubby as he wanted to help me be more positive about myself. Although he laughs that after paying for soil seeds pots etc its cost us much more than the veg and fruit and herbs we will get from it so I sit on a stool and tend my plants, I have courgettes growing nearly ready to harvest that I grew from seed, and oregano and lavender and basil. Maybe you can find something easy you can enjoy too.
Louise I really feel for you life is so very hard especially when you are in pain all the time. YOu are not alone feeling the way you do I hope things are more positive for you soon

Love and Hugs
Theresa

dreamdaisy

I love having a French thingy! Thank you for the giggle. I'm now 51 but I have to be realistic. I can't stand up for more than a couple of minutes, I can only 'walk' for about five before I need a nice sit-down, I struggle opening caps and tins and taps and holding my iron, I can't turn over in bed without waking up first to do it, I can't even get out of bed like a 51 year old should, I should have the nickname 'Lurch' because that describes the ungainly manoeuvres that pass for walking when first up, and for those carried out the rest of the day when without a handy support, yep, I am your Grandma. I get so annoyed when blasted pensioners go speeding past me in town as I totter along, that really brings it home just how washed-up I am. But luckily . . . . .

I have an extremely good sense of humour. I can see the ridiculous side to all this, and God knows it has one. (I'll PM you a dreadful secret.) I learned long ago to ask for help, pride has long gone, it does all have its funny moments and I like a giggle.

I also have a wonderful husband who is nothing but supportive, never moans or complains about what I have or haven't done in the house, who does iron his own shirts when I am so flattened by fatigue I can barely talk. This site has also been a godsend, because there are many wonderful people on here who are far more badly affected than me and their spirit is infectious. They are the ones I learn from now and I hope I offer something in return. DD

theresa4

My 82 yr old grandma with a heart condition and 1 lung walks quicker than me :oops:

dorcas

Hi Louise,

Pleased don't be hard on yourself..... two months isn't long for any treatment for depression to become effective. You have done so well thus far and sometimes it's hard for us to see progress when we are still in physical pain...

The difficulty with getting up in the mornings of course could/ might well be a combination of arther pain and a symptom of ongoing depression, but it could also be caused by the sleep meds that you're taking? I take 60mg Amatriptyline for night time pain....very effective but if I take it after 9pm then I am like a zombie next day :roll: so perhaps you could think about whether the meds need a wee bit of adjusting?.

Are you getting any ongoing support from your GP & CPN...I seem to remember how good and interested they both were....it would be worth discussing this with them and asking for a review of all your meds so that you get the best possible combo for treating arther as well as the depression.

I think I told you a time ago that one of my sons has chronic depression? all I know from him is that it's a hard path you're on but it DOES get better so hang on in there...xx

I'll be thinking about you Louise....love and (((hugs))) for you and the other peeps who are also having a bad time of it just now.

Irisx

psyart

thank you all for replying!! I always know that no matter how i put things on this forum, someone will understand and make sense of it!!!!

I suppose I thought I had accepted what was going on - but feel maybe I should give myself time - but feel that time is very precious to anyone who has 'arthur'!!!

DD - I have PA, but not as bad as you. Its in most joints but thankfully now the methx is helping keep it under control, as well as not doing so much work,ect. I want to send you loads of hugs (((((((()))))))) though, what you say makes sense and yes this site is a god send, because it dosent matter how daft we feel by saying something, there is always some one who can help and understand us!! My family are supportive, but I rarely tell them how bad I feel!! I suppose, thought, they must see it as no one complains when I am in bed instead of cooking tea!! I have 2 dogs who need walking, but they dont complain when i dont!!!
Iris - thank you for reminding me of your kind words from before, i went back and looked!!! I suppose sometimes we all need to be reminded that we are ok to feel c..py, this thing is hard going for the best of us and with support from peeps on here, we wont beat it but we will see tommorrow turn into today!!!! I am suprised when I have good days, and I suppose I push myself too much on good days, but I'm afraid of not having good days very often????!!!!
I am due to see my doctor again end of this month, his request, so will talk to him again.
your words have given me lots to think about, thank you and ((((((((((hugs)))))))))) to you all.

Louise xxxx

skezier

Hi Louise,

I do actually agree with Iris and think a meds review might help. I hope you are getting a lot more support from the gp than just tablets? maybe seeing a councillor could help? I know I had to way back to help me come to terms with the conditions that seemed to b piling in. My world fell apart and so did I.

You need to see how well your doing not how badly you are doing maybe? I think your dong really well and 2 months isn't long enough flower, hell it took me at least 6 to rebuild my self and I was told technically I didn't have depression..... I never sure that was true but I got there and so will you. I got there and am stronger now than I ever was but do understand where you are cus I been in a similar place.

I honestly think talk to you gp and maybe your rumo nurse, possibly your rumo and hopefully you will soon feel better. A ((((( ))))) Cris x

dreamdaisy

I hope I didn't sound too gloomy, psyart, but I told you the truth as I see it. I've been at this game longer than you, I've made the compromises and come to terms with it. I haven't told you the whole truth, and nobody will ever know that, but I think it is important to not raise your hopes too high.

I used to begin each new treatment with off-the-wall expectations - that's long gone. Nothing is going to give back to me what I want, apart from my dreams. That life is over, I will make do with what I now have. It's the biggest, the hardest, the most important thing you have to achieve - acceptance. Once that is gained, life is a great deal easier. Acceptance takes time tho, I started in '97, an unwary innocent in the world of arthritis. I accepted in 2003. I just got tired of fighting it, it took too much energy, energy I didn't really
have and it finally dawned on me that things were not going to get better.

You'll get there girl, in your own time and in your own way. I wish I'd found this place years ago, I think it would have made a great difference to me then. It certainly helps now, no doubt about it. There are some remarkable people here (not me). Use them! DD

annie_mial

Louise, the way it's going to be is the way you make it. As DD said the sooner you find acceptance the easier it's going to be and even then there will still be days when you ask 'why?'

I thought my life was finished back in 2003, but I am still here and enjoying what I have........a garden now, my books, the birds singing and the sky both day and night. I'm still looking at the stars.

I was very down last year when I finally found this place; this year has hardly been a good one for me in many ways, but all here have helped me through!

Annie

valval

louise sorry this has got to you but we all have times when it imposible to keep stiff upper lip but we do our best to find something to ook foward to a reason to get up and antisipate try to stay positive it does help i know it hard but you have us and you can call in the cafe when ever you are feeling down and need spoiling hope things improve soon val

barbara12

Hi Lousie
I am sorry things are so bad for you,I have been there and still am sometime, has alot of people on here are.
Having to face up to the pain and the things you cant do,really dose take it out of you, and depression can take over,please dont think what you are going through is strange,or that you are on your own.
Give the medication a few more weeks,and if things dont improve go back to your gp,they can find medication thats suits you.
You know were we are when you want to talk.
You take care
Love and hugs (((((((())))))
Barbara x

speedalong

DD wrote

I get so annoyed when blasted pensioners go speeding past me in town as I totter along, that really brings it home

Yes, that was when I realised how dreadful things had become for me. Not only was I in agony - but the old folks were haring past!!

I say to my friends I know what it is like to be old and I don't like it!! I've been old in my life twice - for several years in my late 20's/early 30's and now again in my late 30's/early 40's .... Perhaps I should retrain as a lecturer in geri-studies!!!

DD - your body might be kn******d but your witty, sharp brain more than makes up for it.

Speedalong

speedalong

Hi Louise - Firstly congrats on finishing your assignments - must feel like a huge weight off your mind .... until they set the next ones!!! :roll:

You sound as if you are reacting really normally to a C**P situation!! Arther is a nightmare and none of us welcomed him with open arms or willingly invited him to share our bodies! He does wreak havoc with our plans and how we live our lives and finding a balance between what our bodies need and what our brains want our bodies to do is a juggling act that we all study for life!!

I went through a very tough time with S when he was having lots of health related problems and his behaviour became really challenging - I was getting no sleep and no break and I was increasingly struggling to cope and could see no way out ... He was referred to CAHMS for support - a worker came round and decided the best way to support us was for her to come weekly and support me and inturn I could support S through this VERY bad patch. This was pivotal and rescued us from going under. Once a week she arrived and we chatted ... it meant I could talk all about it and discuss ways round it without feeling a burden to anyway or disloyal to S - because it was her job to listen and she didn't judge. If we were having a really bad time I hung in there knowing I was going to be able to talk it all through when she came. I think basically she offered my counselling. Now if I'd been offered counselling at the time I'd probably have turned it down ... but actually it really helped.

Another thing that really helps me with getting up - I was having the same problems a few years ago - and I bought a sunrise lamp/clock. Suppose you want to get up at 8 - you set the clock and half an hour before you need to get up the lamp starts to shine really dimly and simulates a sunrise. It really worked for me in the winter and I ended up getting black out curtains so it works for me in the summer too.

I think you need to be kinder on yourself. You will find a way to live a balance between what your brain and body want/need. It takes time. Remember even people without arther have rubbish days ...

Another thing that really helped me was voluntary work ... I know you are studying now and so now is not the time, but a few years done the line it might help. Helping people who are also having a dreadful time (but for different reasons) can be absorbing and diverting and put a different slant on things.

I'm not sure if any of this will be of use to you, but chin up girl - keep reading and posting. ((((hugs))))))

Speedalong

psyart

thank you again for the replies - DD - i appreciate you telling it as it is!!! thats what i need to know - the truth whether its good or bad!! my rhummy nurse said i was too hard on myself and i suppose i am and i judge myself as well!! but here, no one judges you, you are who you are, and this site maybe helps us see more inside ourselves!! hope this is making sense?? i think i am so frightened about what is happening to me that someone needs to tell me, but also give support along the hard way. here that happens as someone has felt what i feel?? i also think that because i have lost friends over the last few years because i have changed, this site allows me to moan and say how unhappy, confussed etc i may feel but someone will always be there to answer me! Theresa4 - i hope you feeling better now? xx
I had thought about volunter work, i think i need to do something that will get my mind off 'arthur'. again maybe its the fear of how my life is and has to change??
Thank you again to everyone - i have read and will re read you replies as they make sense to me!! There is a man across the road who is in his 80's and he walks faster and better than me!!


(((((hugs))))) to you all Louise xxx

tillytop

Hi Louise - so sorry it is all so hard for you at the moment. Acceptance, as some of the other peeps have said, is I think one of the most important and one of the most difficult things to achieve. Particularly as, with arthritis, you don't really know what you're accepting because it is continually changing. The "not knowing" has always been the hardest thing for me.

I really like Annie's post. I too have (finally) learned that when your life closes in around you, taking pleasure from the small things - whatever they may be - can make all the difference.

So hope that things start to improve for you soon Louise. And do keep posting - as they say "it's good to talk"- and I think it really helps with the whole "coming to terms with it" business. Thinking of you. Love Tilly xxx

speedalong

There is a man across the road who is in his 80's and he walks faster and better than me!!

Typical!! Who does he think he is?!! :roll: :roll: :roll:

Next time you see him - stick out your walking stick - that'll sort him!

Speedy

lindalegs

Hi Louise,

I have to say that you won't always feel like this it will get better. In my 24 year experience of RA there have been some terribly hard times and I've felt I don't want to face another day of it, but I came through it and you will too.

Acceptance of such a life changing illness is the most difficult hurdle to get over but once your brain has adjusted you'll find that you'll look at things differently. When I first started with RA, with a newborn and a 2-year old son, I'm sure I was depressed but didn't seek help because of pride so I wept, it seemed, for many a year. You've done well because you've sought help and hopefully this will aid you in coming to terms with your PA.

It will take time and you have to live each day as it comes and tackle that day differently according to how you feel.

I'll say again you will feel better than you do now, it's not always so bleak. Talk to us, we'll try to help because we've all been through what you're going through now.

Luv Legs

carola

Google the poem by Frank L Stanton called Keep a Goin'

My 87yr old Gran read it out to me over the phone a couple of weeks ago to cheer me up and my eyes leak every time I think about my Gran telling ME to keep on going when it should be ME telling HER! Bless her :P
We all soldier on from day to day and try not to let our friends and family know just how bad Arthritis can be therefore please don't think for a minute that you need to bottle up your frustrations and downers all the time. Keep posting your lows on here as we all empathise and it is better out than in.
I feel I have lost my identity of who I am since RA has a hold on me. I find it is stuped nonsensical things that hit me in the face about RA eg not being able to wear my trademark stiletto shoes, glamourous clothes, cannae curl my hair, cannae dognap one of my friend's dogs and take it for a walk etc etc. Never mind not being able to work! Arthritis is not only a physical thing but a mind ****.
Take one day at a time - cry when you need to, sigh when you need to and smile when you can and KEEP A-GOING'

ginster

psyart wrote:

Hi everyone - not written for a while - have had 2 assignments to do for my Fd - one has 5000 words - i can write some rubbish!!!!! anyway - i will get to the point!!! :oops: :oops:

i am having trouble getting up in the mornings!!!! some of you good peeps might remember that I finally went doctors and also saw my RN, who both said I had depression - which I finally agreed with!! I have been on mild anti-depressants for nearly 2 months now, they also gave me meds for sleeping, which has helped as was not sleeping all night due to pain!! But the mornings are hard!! 2 months ago i felt that i had lost all my positive attitude to life, but that is back, but only once i get up and get moving??? lying in bed this morning, it hit me - i feel that every day is a struggle and as i dont really know what will happen during the day - eg fatigue, pain, etc, then if feels like i am struggling to get up to face the world??? is this making sense?? :oops: i have not had an easy life, i dont want sympathy, as i can normally say ok, **** happens but on we go again, but at the moment i am finding it hard to pick myself up mentally and cope and move on - wheather its slowly or not!!!!!! Even on days when we have had sun shine, I find it hard to get up!! sometimes i have been in bed until midday :oops: No its not really pain or major stiffness!! i get that first thing, but once the pain killers have kicked in, i am not too bad!!! i have just lost i suppose you could say - hope in my life??!!!! please can anyone tell me if they feel this?? No i dont feel suicidal, but this is the only way i seem to be able to explain it!!! i dont sit and cry, i do feel better than i did a few months ago, this seems to have crept up on me?? :oops:

a very confussed Louise xx

It all


Hi Louise I know exactly what you are saying I feel that way too - only most days I sit and cry - Its not easy coping with the pain and aches every day - am glad your feeling better than you were tho take care ....Ginny xx