This has been forming in my head for a little while so bear with me. As you all know i'm under the shrink at the hospital (can't spell ). I do a lot of thinking sitting here resting. I find i am angry at myself for having this disease and wonder what i could have done to deserved it all. Not all the time because i believe that god only gives us what we can cope with,somedays i wonder about that. Hubby took me to nuneaton this morning, i find that i don't want to hold him up and try and rush to get what i want done and not enjoy the privilige of being taken out. I feel its too much hassle to go out sometimes, anyone understand where i'm coming from. I hate to ask anyone to take me out, though i know i've got good neighbours who will oblige, just hate to ask. I know i am seriously depressed and as i'm having treatment i wonder if it has brought all these thoughts to the fore. I feel that i don't want to hold people up even if its my loved ones.
The ra and the fibro have had a devastating effect on me and i have got to try to accept the disease and work round it. Thats easier said than done. I've always said that i wouldn't give in to this damn disease.
I am usually a cheerful person as you all know too well from my previous blogs, and i am, its just hard sometimes to anylise whats going on in my head. I have a lot of pain and no answers. I feel that everyone in the medical profession is fed up with me. Silly i know,but thats how i feel.
Now to finish on a more cheerful note, i'm going to go and wrap xmas presents.
Ta ta. sylvia.xx
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sylvi
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Sylvi, I am so sorry you are feeling so down, unloved and neglected. You always try to be so cheerful on your blogs. I am sure your hubby understands
how restricted your movements are and doesn't mind you have to go more slowly. My hubby who normally walks at the speed of an excocet missile, has had to slow his steps to accommodate mine which on some days are just a hobble leaning on him and my walking stick.
Do enjoy a day out - perhaps have a nice lunch somewhere as well. It's the little things in life which make all the difference to a bad day.
RA is a devastating disease which takes over your whole life and coupled with Fibro as well must make it doubly hard to cope.
Do talk to the chap at the hospital about how you feel. Perhaps also speak to the GP surgery next time you are in.
Do ask the neighbours for help. Like you I hate having to ask but sometimes you just have to. My friends round the corner are always happy to oblige as are friends some 10 miles away who will always come over if I need them. People do understand your limitations and are generally sympathetic, helpful and caring. My next door neighbours have said I can call on them anytime.
It's sometimes very difficult to find things to make us face the world a bit better. I find a good book, music, perhaps a good film on the TV or just watching the wild life in the garden all helps. We are close to the sea and I get my strength from watching the sea as well (being a water sign myself). At the moment the geese and swans are starting to come in to the wetlands and they go right over our house so I always rush out as soon as I hear them. The swans wings make a rushing sound and you can hear the lead swan honking to show the others the way. Such beautiful birds.
Hope you will soon feel a bit more like your old self. So glad the wedding went well and you enjoyed it. I bet you saw some changes in Cambridge.
I know lavenderlady, my husband will do anything for me and my neighbours will too. Its just me,know what i mean. Its cold and windy and i hate the winter,i'm not very good in winter when everything is normal, now i wish i could hibrenate until the spring.
Cambridge is a place i don't regonise, I've been to four weddings this year and i have to say saturdays was the best. Thats not too say the other weddings were not nice they were lovely..
I think its the treatment and talking about things that have brought it to the surface, i have to talk and sort the thoughts out. I don't think that i'm the only one.
I wish i could see the swans and the river,the nearest thing we have is a canal and thats not across the road.
Love Sylvia. xx
The pyschologist(shrink) is meant to help you deal with these feelings??!. I have just started seeing one via pain management..so far be given a cd on relaxation.. needless to say I havent listen to it much..a . very annoying voice.!!. different things suit different people.. I prefer tai chi.. we are meant to go through stages such and denial, grieth and acceptance is what all these people say.. im vaguely at reluctant acceptance..
Acceptance is something i find hard to come to terms with. This is only my second time i have been to see her. She is nice and we will see what the outcome will be. I have relaxation music,but i would sooner have silence at the moment. I don't even have the cd on, i can't read a book either and i used to be an avid reader. I'll get there sometime. I'm not someone who gives in and thats my problem,i've got work round it. They tell me its not giving in, but acceptance.
I think i've started something here haven't i, because it looks like i'm not alone in this. Let me know how you get on and i'll blog on here with how it goes with me.
I understand. I have two modes with my friggin hands dull ache/ or sever pain. It makes me miserable which sort of pain it is. Its not fair I've got this, but its life. I finally reduce my hrs and have time to travel and my free time is taken up with GP or hospital apps. I did manage to get out to the pictuters last wednesday and have a normal day. Pain less and I could function.
I don't know when I am gonna have a good day, but I try to do something every day. I am depressed at times mainly when have had a flare or been in moderate pain for a while. I can't say we get use to it, but I think its normal to be down at times.
You and others have helped me and other newbie's immensley. I don't feel so alone. For the very time I can communicate with peps and gain from their experiences to try and help my ra. You are one of them and hopefully tomorrow i can get out and look for those hosery we've been talking about.
I have always been a fighter. There have been times I feel as if I can't cope, but I will aways be a fighter and I am determined not to let ra beat me. I will fight for you for a while, until you can take back the reins and fight on again.
Keep us updated and take care of urself, hubby just got in and says its really cold at mo! haven't gone to walk dog with him today as I am feeling the cold. But I am still fighting, but tonite its in spirit!!!
Good on you sci, i refuse to give in to it as well,its just sometimes i wonder why i try so hard and get nowhere. I've got to exercise but when i'm in pain how the hell am i suppossed to do that. I am usually more upbeat but this disease is often forgotten when people who see you and tell you,you look well,but inside you ache and could cry for england. I will try and make my next blog more cheerful. the depression comes as a side effect to ra and fibro.
Well sweet i'm of upstairs to watch tv as hubby has the one on downstairs.
Good grief sylvi, you put us to shame. I haven't even bought any yet although I have thought about it and mentally thinking what family and friends would like and then changing my mind again!
Hope you are feeling a little better and not so down. Love LavendarLady x
How organised are you -wrapping Xmas presents-i haven't even bought any yet.
Sorry to hear your feeling so low-youv'e had a lot to put up with in the last few weeks.RA is random you've done nothing to deserve it although when i'm having flares i think i must have been evil in a previous life!
i'm glad your having counselling but i think it does take time to have any benefits.In the meantime ask for help if you need it .as for asking for help how many people have you helped out when you could .Most people are glad to be asked.
As for acceptance after 7 years i still don't feel that i've fully accepted RA and not sure if i ever will totally especially the limitations it puts on your life.
The Samaritains are available 24/7 if you need a chat
Julie, when i've got you and the others to talk too who needs samaritins. I get very fed up with this disease and i want to rant at the world. Depression is something thats not talked about and people are ashamed to admit it.I've opened up a debate here,i didn't realise there was more people with ra and fibro who are suffering with depression.
The thing with the xmas presents,i have to do when i get the oppournity to go to town.I've got most of my daughters and they are wrapped and the others i've wrapped are my husbands family down in cambridge. I've got to finish getting my cousins family and i think that with my outside relatives i'm done. My son has had money when he went abroad,but i will get him something for when he gets back.I just need to get hubby a bit more. We went to b&q yesterday and i got some tinsel and a couple of hanging decorations. I won't be able to get out so much if we have another hard winter and i'm not looking forward to that.
I got up at 7.30 this morning and i had a good nights sleep which is good, as to what i will do today is anyones guess as its not very arm outside.
Hi Sylvi, glad you had a good night's sleep - it makes all the difference.
How is the weather your way? Here in Norfolk, it is a beautiful day although chilly with the wind off the sea but clear blue sky, no clouds and the sun is shining brilliantly. The St. George flag on our flagpole is flapping madly in the breeze. We fly it all the year round being very patriotic! Can't be bothered with this European rubbish not with an ancestry I can trace back 800 years!
It sounds as though you are really well organised and you are galvanising me into action as well. My son and daughter in law have asked us to give them the money we would normally spend on their presents as they want to get a new sofa so we have agreed to do that although will probably get them a little something as well. Son's birthday is 6th December and never know what to get him. The grandchildren are easier. Matthew is well into Lego and Olivia loves ponies, my little Princess etc etc.
I think we all suffer from depression from time to time - some mildly, some very badly. I am still waiting for a referral to the clinical psychologist - my GP sent the referral letter months ago. I do find I have up days and down days - don't know whether really depressed or just a bad day feeling sorry for myself. We do need a proper debate on the subject but so many people shy away from it. I think it is because you cannot see anything physical like a broken arm.
Well done for raising it on the blog.
Hope you are feeling better today. Love LavendarLady x
Hi lavenderlady, i am just the same as you some days good others bad. I think that i have given up so much because of this disease,eg,driving,dancing,working.Who will want to employ me in the state i'm in.I know i'm lucky to be alive and there are people who are worse off than me,but at times you can't see past the pain.
For your son why don't you get him a gift card for ipod,cd or bits for a computer.
It is lovely and sunny here in the midlands,but it is very cold. I went to bedworth this morning and got a bit more xmas shopping.
I will try to be positive and sometimes i'm really good, my mood changes with the weather i'm afraid to say. I don't like the short days of winter roll on the spring.
Love Sylvia. xx
Hi Sylvi,
I've quoted this statistic before - but it's worth another airing - 8O% of people with any kind of arthritis suffer at least one episode of depression requiring medical attention (gp visit and/or referral, anti-depressants etc).
I'm a psychotherapist and counsellor and I came across this statistic when researching the issues involved in adjusting to the diagnosis/realities of a chronic disease, for an article. In my practice I see people with all kinds of illnesses - MS, ME, Crohn's, Neurological Disorders, Arthritis etc etc - and it's a grieving process as Ali said. Grieving and adjusting to the loss of the life you had, the life you thought you would have and your hopes and dreams for the future. This involves denial, anger, despair and all kinds of mixed emotions on this spectrum. This said being chronically in pain is depressing (you need adequate pain relief) and being depressed makes pain harder to deal with:-(.
It takes time and plenty of talking about how you are feeling but you can reach a stage of acceptance where you don't feel that you have to be embattled or fighting it - rather living positively with it. I'm in this place now - that doesn't mean that I don't feel a bit miserable when I'm having a flare but I medicate adequately and know that it will pass. I have a new 'normal' which is about how things are in the here and now rather than hankering for how that were - at times as RA 'munches' away somewhere else (lungs, spine etc) that definition of new normal changes and adjusts. My focus is on enjoying what I can do now rather than dwelling on what I can't do. I'm not saying that this is easy, it's hard won but I got there and you can too - it sounds like you are taking the important first steps:-}
Thanks cece, i've not got to the acceptance stage yet. Thats why i have done most of the xmas shopping as i can do that on my scooter. I want to feel useful and sometimes i feel that i can't be of any use at all. It is frustrating not being able to do what i can, and when i do do anything i suffer, i haven't got this pacing thing sorted out yet. I think with talking about it at the hospital will help, not sure how long it will take, but at least i'm on the right road.
Its lovely that you are experienced in this field, you put some logic on this sort of thing and i thank you for that.
Glad your feeling a bit brighter today-as BT say it's good talk.
Think you live quite near me -it's really sunny but absolutely freezing cold.i've just reduced my days at work so this is my first Wednesday off and it's lovely just having a potter about.I'm also pleased to announce that i've got my 1st xmas present at last (well i've ordered it from Amazon) so at least i've made a start!
I'm fortunate that i've never had depression though i do have some down days but i agree it still does have a stigma attached to it so i'm glad your getting help for that too and you sound positive about it.Let us know how the counselling goes.
Will do julie, i'm glad you don't have depression,its no fun. I hope with debate it will help other sufferers of ra and fibro who also suffer depression. I'm glad to say yes i do feel brighter today went to bedworth while it was sunny.Where do you live,i'm between nuneaton and coventry,so if you live nearby would love to meet you.
I have got a few more bits for xmas, and depending how i feel will wrap them tonight.
Just had a thought -I mentioned before my friend with fibro she also mentioned that she hates the dark nights etc in Winter .She has invested in a light box that she uses daily to lift her moods.Don't know whether it might be worth you looking into this or if any one else on here has used one.Just an idea
I know where earlsdon is used to work over there.Julie your not nagging me so don't worry about it. The way for me to get to coventry is go by train as it is easier for me to get on and off the train. Also i get a free pass to travel as hubby works on the railway. Would love to meet up with you,i will have to use my scooter to get about as i can't walk very far. I've got to get my lights out, but weather has been so nice of late and i'm reluctant to get them out yet. Last saturday when i was at the wedding i even caught the sun on my front.
Thank you so much for your honesty & being you - your experiences along with the others who post on this site, really help me & others to keep fighting, to show this dratted disease thats its not going to win despite what it & the subsequent health issues or drug side effects throw at us.
I so understand the not wanting to be a burden to others, wanting to be able to do things & not have to ask or be dependent on others especially when I see how tired my hubby is with all the extra things he does - no putting his feet up when he comes home from work.
Do be gentle with yourself as far as you can, give yourself little treats that nuture your spirit and build you up - we have a little cafe at the end of our road & on days when I can, I meet a friend for a coffee & put the world to rights!!!
Look after yourself, its so good to read the blogs of you & everyone else.
andie, i've got a hubby like that,thats why i try to do things and why i have done a lot of the xmas present buying.At least i can get out on my scooter a get them and i can sit and wrap them. So i feel a little bit useful.
Thank you for those kind words,it helps as i have to sit here and answer them and i'm not feeling sorry for myself.
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