Feeling pretty low!!
Going away upto Scotland for the weekend on Friday and I know by Friday afternoon after my jab, I will be feeling crap.. What's the point of going?. I have also put on 1 and halft stone and can't seem to shift it either. I was diagnosed last July so you would think I would have accepted it by now and some of the time I have but it is always lurking in the background and you have to think about what you do all the time incase you have a flare or do too much. I can't stop thinking that is this what I have to look forward to for the rest of my life. Drugs and injections,! its pants!!!! I know some of you are probably much worse than me as at the moment as I am not really suffering with pain due to the MTX so I am sorry if i sound like a baby.
I cannot motivate myself at all and only for this blog there is no one I can really let off steam to. My other half is great but not so great when i am sounding off, he does not know what to say to me. Anyway, I better shut up or i will have everyone else on here feeling the same as me.
Aww Debbie i know i know - i was diagnosed last January and i go through stages of acknowledging it and working with it and then i get so frustrated and feel like you as though my time completely evolves around medical appointments and i have no time to actually live. I feel crap too.
But Scotland is beautiful, its a change of scenary, you might not feel just as bad this Friday and even if you do feel crap at least you are in Scotland and hopefully being waited on.
I can't bring myself to think about the future, thats why i keep slipping back to this world of make believe where i don't actually have ra, that it is just a wierd problem that will disappear. Stupid but it appears to be the only way that i can cope with it.
NObody understands - i moan and get sympathy the first time and then i get ignored because they don't know what to do and basically there is little that they can do.
Debbie you are in good company this morning we can be a pair of moaning minnies.
Hope today picks up.
Debbie,mads, today your not alone. I ache all over where the joints have been affected by ra,fibro. Very tearful this morning and i have had ra for 9 long years. LIke you say there are some a lot worse than us,but today it doesn't feel like it does it.
I slept very well last night not getting up until 7.45am and thats a lay in for me. I'm not tired so why should i feel like this,my only answer is the weather.
The trouble with ra is it can't be seen unlike some other diseases. There is so much i want to do and can't. My son is going to bedworth for me as the trip over in my scooter won't do my knee any good today. Nothing will help that until my knee has been redone next month.
I think the ra is having a flare today as my eyes are affected as well as my fingers. I will only do one job at a time today as i don't think i will be able to do much else.
Ladies you can both moan all you like on here as we all understand what your going through. It will get easier as time goes on and you learn how to manage the disease. Sometimes you will get very angry at it as it doesn't have a set pattern. At least we all have each other and i have made some lovely friends on here who i haven't met who know me so well,thats more than some people who are in my life. I am luckier than some as i have a great hubby and kids, so i can't grumble too much they do understand a bit more than most which is great.
Ladies the sun is shining at the moment and the wind is blowing so washing will get dry hopefully before it rains.
Have a brighter day and tell ra to sod off.
Hi Debs mad and sylvie
Its the best thing about this site Debs, everything you have written we all feel exactly the same. I got RA last march and spend most days at physio, OT Rheum, injections, bloods,acupuncture, putting on weight and i still not sure i have RA!!!!
I felt very low and just couldn't accept i had a long term health condition and still cant, but what i did was to get counselling to get over the shock of the diagnosis (normally i would have told the doc to take a run and jump! BUT it really did help, just talking to someone outside the family and being able to vent and getting positive coping strategies and explanations got me through a little bit. I'm going back for more! now I know that unfortunately i am being retired ( it doesn't happen to everyone) and think it will help get me through this stage.
I do get angry like sylvie and mads and eventually i told my best friends that i could tell them about my illness developments but then stop ranting at them and come on here to moan instead lol.
Once they get your medicines settled it should all calm down a bit and a bit of normality will start to creep in again. Its weird , you just learn to adapt, i don't even think now about asking the girl at Costa to bring my drink over, now I have made my mind up to go back out for my girls coffee morning!! In fact she just volunteers now. And nobody comments on my appearance now..they just got used to it, but it was tough as I felt so fat and hated people seeing me with my crutches and no high heels which i loved!!!
But once they star,t if possible, letting you have your treatment at home, it is easier. They let me do my injection at home last week and i gave it to myself at night time so i just went to bed and slept it off and didn't have the dreaded injection day.
thinking of you, hope the day improves, love
Good Morning Everybody. I can relate to every word said! Its a sad, lonely world we live in. I was diagnosed 9 yrs ago, still I am in denial most days. It just doesnt seem real, except when the pain is so severe that I can barely move. today is one of those days. I so wished I could make it all go away for you guys. This is a wonderful place to come & vent. No one seems to roll their eyes with the look oh no, here we go again. or blame it all on my medications. telling me that the more meds I take the more my body is in need! I did not feel exactly like going out to lunch the other day, but I did feel better afterwards. It is a pain to get ready and leave the house, but it helps me. Tuesday I start going back to Bible study with a group of wonderful women, I always look forward to it. Please dont do like I did 9 yrs ago. I did not leave the house, barely got out of bed. I was so depressed. Its not easy, getting ready to get up & go out, but most of the time I feel better when I do, I am sorry if this post seems out of whack, but since the stroke my mind gets jumbled at times. Please take care. gentle hugs to all. God Bless, Linda
Linda, there is nothing out of whack with your blog..you are doing wonderful!1
You are so right, it is so very important to our own rehabilitation after a diagnosis to get out there, go with friends, don't worry about what shoes you are wearing, or how much you weigh! Friends will just be so glad to have you with them, they won't think of anything else.
We can always feel better when we are out, and when we get back home, to remember the events of the day that made you smile.
Sure it takes awhile longer to get ready to go out, might even need to take a break for a few mins, have a cup of coffee and get finished getting dressed and just look at the wonderful results!! God bless you also, Loretxx
Thanks for all your great comments it has cheered me up a bit. Problem is the medication is working as at the moment the RA is so much better but it is all the other things that go with it that is the problem. Not sleeping taking tabs every single day, working up to the weekly injection, struggling to lose weight. I dont know whether i am making an excuse about the weight gain but my mind says its the RA but who knows its probably just me.
Anyway great to be able to let off steam on here, I am hoping I can shrug this horrible mood off but it has been building for a few weeks now so I may have to kick myself out of it.
hi again Debbie, i ended up getting antidepressants and they have made such a difference but i am well aware that I am just covering the cracks. It has no doubt lifted my mood.
Hi Debs, am much the same as you - working up to 20mgs of MTX and now got some bloody rash all over my face and feel really hacked off with it all. It's like having a new job that I didn't even apply for - who in their right minds would?! But it's a lovely day and my hubby is cooking tea and boys have their exams just round the corner and I'm determined not to let it all get me down. Found out today that my rheum cons says that my depression is probably caused by high level of disease activity rather than the MTX which I think might be right but then what the hell is he doing about it eh?! Honestly it does really suck but at least we have each other and this fab site. Take care big hug across cyber space. And hey I'm going down to Scotland tomorrow so we might even pass in cars or trains without realising it! - have a great time! TTx
I think it's only normal to get to wit's end with this disease from time to time - and I find that it can sneak up & bite me even when I think I'm feeling fairly ok about it. I'm doing reasonably well at the moment, and sometimes that's just as hard mentally as you really, really want to throw away all the pills & potions and just be normal for a bit and drink wine and stay up late.
But it does get a bit better, as I now find the good'ish times are lasting longer than the low & miserable spells. But I know what you mean about motivation, mine's shot to pieces and left to my own devices I'd probably stay on the sofa. All I can say is that tomorrow's another day, so don't beat yourself up but do something nice & try to start again tomorrow. And even if you feel rubbish on Friday, hopefully you'll have at least one good day in Scotland which will be an achievement. Polly
Hi Unserstand how you are feeling, I was diagnosesd in January, and I feel like I have been hit with a brick. I also have Bipolar on top of the RA so the two illnesses collide a hell of a lot, even though we take the meds ect the tiredness ect really plays havoc with us, and just want it to go away, most of the symptoms happen where other people can't see so people will not always understnad what is happening. Hope things settle down a bit for you soon. Take care, Paula x
I wonder where you're going in Scotland. We live here, but just getting away for a few days in the highlands can help me to see a bigger picture and partly leave the illness behind. Although if you're used to being able to do long hikes it's so frustrating to have to be content with little ones. Yesterday my husband went off to climb the most northerly Munro leaving me alone for about eight hours but it was a bright day I chilled out and he came back in the best frame of mind. I talked him round to seriously exploring insulating and putting underfloor heating in our ground floor tenement flat with high ceilings.
I hope you're going somewhere really comfortable and that the weather is kind. It's glowering here on the north coast but I'm off for a shower heated by solar energy!!
We are not going to anywhere as restful as you are describing. We are going upto Edinburgh on Friday and over to Glasgow on Saturday as we have friends who live there.
We have been upto Scotland on many ocassions over the years and have gone to places like Glencoe, Fort William, Inverness, and the gorgeous Loch Lomond, staying at the lovely Cameron House. It will be a nice break however and when in Edinburgh we always try to go to a little steak house on Rose Street called Wildfire. It is very quaint but nice steaks and seafood.
Lucky you living up there.
I dont know if this is going to cheer you up, but i'm originally from Glasgow and used to get taken by the "Sally Army" to Glencoe and Loch Lomond as a trip for "deprived kids" to see the countryside lol. We of course led them a merry dance but i loved chips at Loch Lomond, singing "this little lamp of mine" on the way home and of course Glencoe.
But now the kids have a problem cos when i die I want chucking off the sisters in Glencoe. We live in North Yorks....so i decided that yes it would be easier from them to cremate me first( be easier to carry!!!!!) I do have a weird sense of humour but the kids think its hysterical and have now vowed to do it for me ....weather depending.... ha ha
It's lovely although it'll be a lot nicer when the tram works are finished. The cherry blossom was coming out on the meadows at the weekend when we left if you're anywhere near there. It sounds like a busy trip, I'll look up wildfire, don't know it. I hope you can relax a bit and the ra gives you a bit of a break. I always get very stiff when we drive, less so on train. We are lucky to live here, we moved from Oxford which was getting too noisy and overcrowded, to be nearer family. Ra treatment had stabilised by then, the big difference is free prescriptions and much less waiting around in hospital.
Next time you fancy a break we can really recommend the Hebrides and the north coast... So much to explore!