Feeling so isolated!

It is still endless rain and pain. Nothing I can do about either. I am torn between wanting interaction and growing agoraphobia. The more time I spend by myself the more difficult it is to want to leave. I only go out to doctors, tests and treatments. I know this will sound odd but I am frustrated the inflammation remains so low .06. It seems the doctors only respond to that number. Despite the lack of inflammation there continues to be disease activity. Severe fatigue, confusion and burning pain in hips, elbows, feet, hands, shoulders Ext... it simply feels like the calm before the storm. We seem to all be waiting for the next storm. I just want to get on with it. If this is as good as it gets then what is the point? I have grown children who are fortunately, well adjusted. I am so so tired. It seems impossible to get joy out of life. I need to feel useful again. I just cannot find the strength to start over. I can barely manage personal higene and meals I certainly could not contemplate a regular job. How do you all manage work with disability. I hate the stage I find myself in. Waiting for next big crisis. If we had a crystal ball perhaps lol Sorry for whining.I just feel sad.

18 Replies

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  • Totally understand. The rain & pain. So tired of the same old same old. I want me to be me again....

  • I understand your situation, it is all very hard, fortunately I am on medication that seems to be working well, despite that I still felt the way you are describing, I talked to my GP and set up a few sessions with a psycho therapist which really helped to get a lot of things in perspective. It is really worth pushing to talk things through with someone, it is a lot to cope with trying to get your head round this disease, unfortunately the doctors don't have the time to explain things & reassure us that it is not all hopeless. Good luck, I hope things brighten up for you xx

  • I feel for you, really I do. We've all been there and it's horrible. But don't give up, there IS hope, light at the end of the tunnel. Everything about this disease can make us depressed, so please DO push to find someone to talk to about it. Do you live alone? I do, and that sure doesn't help either. You need al the support you can get. And eventually the right medication will help too. The tiredness is the worst aspect, people don't understand medical fatigue. Sending you warm thoughts, hugs and prayers. xx

  • I am sorry you feel so poorly and am sending you hugs so you know people care. I can't work anymore due to not only ra but fibro and chronic fatigue and thats without the compressed disc which is causing ,me an awful lot of pain and a infusion that hasn't worked so i am in a lot of pain.

    You mustn't give up darling and i am sure they will get you something to ease your suffering. What hobbies do you or used to enjoy,could you take them up again. My hobbies had to change and now i take photos when i am able and usually they are from my garden and home and when i manage to go out. I also enjoy adult colouring and i can spend hours doing that. Could you do something like the colouring it is most relaxing.

    Sending gentle hugs your way and know we are all here for you anytime you need us.xxxxx

  • Just wanted to say what a nice message to send someone who is so low.......

    I fill my days with all kinds of projects... I love writing and write some funny some deep opinions on a blog thingy....I also sell bits and bobs on Etsy and the chats across the globe is quite enlightening.... There are some great people out there just to pass a word or two over the net...I knit, not as fast as I used to, make wacky baby booties, hoping for a grandchild to come my way. Music will help to lift pain and take you to another place. I used to play the piano regularly, and that has reminded me not to give up... Crosswords, (easy one) that is satisfying.

    Good to hear you take photographs, it is amazing the images that can be caught.

    I force myself to make awful cakes. I make lists of what I think I am going to do and cross off what I have done.... The first thing on the list Get Dressed. so I am off.

    Hopefully the sun will come out tomorrow and that truly does help.

  • Good for you darling. When i am out and about people will talk to me because of my hair being multi coloured. My nails are coloured as well with all different colours.I am known in Tescos as the lady with lovely nails.xxxxx

  • I know exactly how you feel. I am prone to hermitage. At the moment I don't have much energy for interaction. It's tricky just walking the dog!

    I don't work at the moment. Haven't done so for a few years. Not sure how folks manage that! I'm better than I was, but like you, I have zero energy, and don't seem to get much joy out of anything.

    I think depression is the autoimmune disorders friend. I do certainly struggle with low mood. Perhaps talking with your doc might help? Or some kind of club where you meet folks? I do often feel a bit better if I've been out for a coffee, and just been around other people.

    I won't touch antidepressants myself, but they do help some people. Have you thought about this, or maybe counselling?

    It can be a very isolating illness. I have noticed a huge change in my own behaviour. I used to be the life and soul. I feel more like a warmed up corpse these days!

    Things have got a bit better, and I'm hopeful they will improve more. It's just the exhaustion isn't it. That hangs around like a bad smell.

    I don't know where you live, but if you lived close I would come round with coffee and cake to be sure.

    Feel free to message me if you're feeling really cack. We'd be doing each other a favour!

    😄🌺

  • I have felt the same..especially as within months I had to leave my job of 21yrs except life would never be the same again..I felt cheated angry miserable & didn't get out of bed some days..put off going anywhere & make every excuse possible...but thankfully my family & friends were not going to go away...I thought about many things in life what I had but then remembered the things I have..the people I love..this dam awful disease wasn't going to beat me..I had to stand up.tolerate pain.but not give up..I do have off days..I do have pain.I do know how you feel.but please please know you are not alone.ever...take care.xx

  • What a Downer hun, i must say i have so much compassion fir you right now. I have gone through some very dark places with the disease too. I how and pray you will find light in this darkness, it is possible love I know it. Definitely keep on at your doc. Are you in the UK? X

  • I wonder if something like the exercise referral scheme would help? The doctor or practice nurse refers you to a local sport centre where you have an assessment and can then, for a very low fee, join in with specially adapted sessions for people with disabilities.

    Yesterday I went to the session of aquafit where loads of people who started on the exercise referral scheme come after they have been going for a while. They are all shapes and sizes and there is great hilarity helping each other dress afterwards. One woman comes with her walker which she leaves at the top of the steps which have a handrail down to the water. There was one woman who was lowered into the water with the hoist, but she hasn't been recently. (I started going to aquafit after going to the pool at the hospital and they got me strong enough to cope with leisure pool)

  • Hi there, saw your post and wanted to say, you are not alone in this struggle (it just feels that way!). This is a hard road we are on, filled with holes that often trip us up and isolation is often our best friend and our worst enemy - when health suffers, we panic - we are only human and we do not have all the answers (however much we think we do!) - sometimes all we can do is let it all GO. Love yourself as beautifully as you can, put YOU at the top of every list you have and never give up trying and reaching out, because whether you realise it or not....just by writing here, you have touched many. Wishing you many brighter days ahead...

  • Hi, I am sorry you are feeling this way, this disease is hard enough. You are not whining, we all need to vent sometimes. I try to stay positive but sometimes it is hard, because I don't hardly go out either. I am lucky I can still work, because I work from home, so I don't have far to crawl if I have that kind of morning. Please hang in there and know there will be good days and bad days. Praying you have good days coming and alot of them. Hang in there, we are here to listen if you need us :)

  • You are definitely not alone. It could be me writing this and I know exactly how you feel. I can't find a drug that controls my RA yet and the one I'm trying is making me very ill. You did the right thing to post as I take heart from the great support on here and the knowledge that lots have been through this xx

  • I agree with all the comments about hobbies as distractions. I know I am very lucky to have a dedicated space for my quilting and other crafts but when I am having to concentrate on a project I don't think of any thing else. It also helps to have some relaxation music on in the background and try to 'loose yourself' in another world. I know that sounds corny but it works for me and I make time for that every day even if it's only for 20 mins. Don't apologise for feeling sad - remember people may want to challenge our opinions or statements but no one, absolutely no one can challenge our feelings. Hope you manage to find some comfort in the days ahead when the clocks go forward giving us lighter evenings and hopefully some warmer weather!! xxx

  • 💐💐💐🤗🤗🤗

  • Yes your not alone ,we are all with you and have been there ourselves so vent away as we are here for you and this site helps us to get through this horrible and lonely illness xxxx

  • Don't feel sad, I know that is so easy to say that... People can never truly understand another ones pain.... Try and look forward to tomorrow for apparently the sun is going to pop out and Spring is just around the corner...Try making a little list of the things you enjoy doing, and even if you only do one of those things... that will be a good start.. Listen to music, I squawk away singing, thank goodness no one is around at the time to hear me... but it takes you away from pain... as your brain is distracted away to another level.

    XXX

  • That is why I like my vaporizer, it does nothing for pain but distracts you. Also a good anti inflammatory.

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