Not doing so well

Will apologize before I begin for being so down but just need to get out how I am feeling. Just so sick of being tired and not able to do any thing. Can't walk far because of pain so stuck in the house all day, which then you sleep even more. At least then you can dream which at the moment is better than reality. Nothing to look forward to except more of the same day in day out. I know a lot of people are worse of than me and I should be grateful, but my positive attitude is leaving me rapidly. I have always been so active, dancing, long walks with the dog, physical job always happy and carefree. Suggested booking holiday to my husband, just to have something to look forward to. He said it would be a waste of money because if I am not good we won't be able to leave hotel room and what's the point of that. Anyway shattered once again so of back to bed. Thanks for taking the time to read my whinge. Karen x

16 Replies

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  • The thing to remember is that bad periods are often followed by not so bad ones, so just hang in there for now and keep head down while this passes.

    Your hubby seems a very pragmatic man but he isn't as ill as you, so he might not realise that going out of the usual 4 walls, even if exchanging for a different set of 4 walls, can do you a world of good. Seeing different people, different environment, even if only for few days and in limited circumstances, will take you out of your negative outlook at the moment, so I'd say that's definitely worth the money.

  • I so agree. A change of scenery often does wonders for our morale. I hope your hubby changes his mind and you get away. I sympathise, am in a similar situation for different reasons and I wish you well, hang in it will pass :) xxx

  • Hi KarenC,

    I'm sorry to read that you are feeling so down at the moment. If you would like to be put in touch with somebody within your area to talk to who also lives with lupus, we have contacts across the UK who are available for a chat. Just let me know where in the UK you are either by sending me a private message or an email and i can happily supply you with their details. hayley@lupusuk.org.uk

    Obviously, please feel free to use this forum as much as you need, but if you would like to contact us here at the National Office for anything at all, please do so on 01708 731 251 and we will do our best to help.

    Best wishes,

    Hayley

    LUPUS UK

  • KarenC, I am sorry that you are feeling so down. It really isn't fair is it, one day everything is going as planned and then all of a sudden you have this big anvil that you have to carry around all the time. I understand what your husband is saying - usually it is my husband that suggests a trip and I am one saying "what's the point". But there is a point isn't there, like Purpltop says, just getting out of house can make us feel better sometimes. I don't know many people in this little town we are in - we are not in our real home, we move around with my husband's work - and I can get housebound and feel worse about everything. If I go for the short walk to the Main Street, make conversation with ladies in shops, then the walk home again, I feel better for the rest of the day - not strong and healthy, but strong in spirit. Just chatting with you, and the rest of the people on this wonderful site, can make me stronger for the day ahead. I hope you are feeling better soon and can spend part of your day being the person you really are, instead of the one in pain.

  • Hi KarenC,

    Sorry you're feeling this way. The good thing about these forums is having somewhere to vent and have people who understand instead of telling you it's all in your head, you need to be more positive, they have aches and pains too!

    I hope you feel better soon. You should book something for yourself - even an afternoon getting your hair or nails done, providing that is not too draining in itself. I love a good box set when I'm not feeling like doing too much and it definitely helps to have something to look forward to. I can think of at least one hotel near me where it is lovely to sit in their sitting room supping tea and admiring the scenery.

    Hope you pick up soon.

  • Hey I know exactly how you feel. It's hard sometimes when you compare life to what it was before lupus.

    But just make sure you rest properly when you're poorly so that when you're then feeling a little better you can do something you enjoy.

    Lots of love xx

  • Hi Karen, totally agree with all the above comments. When we are in a bad flare or in pain our thought processes change and it's hard to think clearly. It can feel as though life is just passing us by.....then perhaps with the right meds, rest it can ease up a bit. I hope this easing up bit happens soon. I also agree it's good to go on holiday. I went to Austria last Christmas with my hubby....he skied and I got the bus to the pool some days which was also more spa like and very relaxing. I did flare incidentally when i got back and I also took my heat pads with me for the room and sometimes I missed dinner on 2 out of 7 nights . But I had the memory of the place, I met another lovely couple and my hubby also got to do what he liked to do We both enjoyed skiing before this. Occasionally it would just be a coffee and cake day for me...but I took books, enjoyed the mountain air and I remembered quite a bit of German and got to practice it. I say if you get a bit of respite from the pain then do go....I know we have to give in to this condition but if we get chances to do things sometimes it's worth the memory xx

  • Like others I think that a change is sometimes as good as a rest - well maybe just a rest with a difference anyway.

    I do know how you feel because I'm always tired and chilled just now with my strange form of RA. Today I spent the morning in bed - got up and walked the dogs around our small town in the rain and wind - came home and did a few hours work (self employed) and then went back to bed and slept some more. I'm not in much pain just now but my eyes are horribly tight and dry constantly and I ache as though I had flu. I have Raynaud's chills and small fiber neuropathy which right at this moment is making my legs thob horribly.

    We are going away for a long weekend down to see my mother in law in the south of England (we live in north Scotland). Then onto visit friends for their joint 50th birthdays. I'm trying not to dread it because I know that the travel alone will wipe me out.

    Then in October we go on the trip of a lifetime to New York. My husband and 17 year old son are lovely but they have no concept of how tired and low I am just now. They keep talking about all the things we will do when we are there and I'm scared witless that I'll be a knackered and unwell as I feel just now. But I'm not telling them as don't want to spoil their excitement. I will snatch rests and take lots of back up wrist splints, a walking stick and drugs galore including Prednislone just in case.

    I hope you decide to go - if you end up resting while your husband does stuff on his own then it is still better than being stuck in stairing at the same four walls I would think?

  • Hi Karen, sorry you are feeling so bad. Like you I too have been struggling, I've had a successful job at a major corporate for 14 years and haven't been to work this year. My husband booked 2 days in Dublin and I thought that it was a major waste of money as I'm virtually house bound, and to my surprise I managed quite well and thoroughly enjoyed it. I was however VERY ill when we got back :(. One of the best things I have done is start a new hobby. My hand were so stiff and painful I decided that I needed occupational therapy so I learned how to do origami flowers. It was rather a tame past time after what I had been doing but I have done the flowers for two weddings this year. Which means that there has been a positive outcome to my illness, I've also had some councelling. :)

  • Hi Karen C

    So sorry to read your having a bad time with pain and fatigue. I completely agree with the other replies of the importance of having something to look forward to. Also have you got someone who could take you out, just for coffee, you'd see different people and feel part of life. I 'm in a similar health position as you and find that beneficial.

    If your flaring can you up your medication dose to improve symptoms?. Do you take steroids or can you ask to take them for a short time to help the flare?. Might be good to see if you can see your Rheumy earlier via your GP or a cancellation?. Depending on what is causing your pain I can also recommend a PainClinic as they can help with different treatments and coping strategies as there is nothing more debilitating than persistent pain!. I hope you feel better soon and look after yourself. This illness is cruel but it will get better. X

  • So sorry things are heavy going at the moment. In my prayers.

  • Thank you so much everyone, just reading your replies made me feel better. I am still working on my husband and will keep you posted of any developments. My rheumatologist has increased my steroids and I am back on methotrexate now after a problem with my liver for a couple of weeks, so hopeing to feel a bit better soon. My sister sometimes takes me out but is on holiday now so feeling a bit trapped if I am honest, but just going to have to take each day as it comes. Once again a very big thank you for not thinking what a misery and understanding some times we have to vent our frustrations with this horrible disease. Much love to you all xxxxx

  • I know what you mean, feel the same here, we could not go away as I did not feel up to it but hubby took me out for lovely long drives and lunches during our staycation but yes utterley sick of the pain, fatigue, the daily limitations, the friends drifting away, unable to work and money worries as a result etc. Wish I had some comfort to offer but not other than you are not alone. Al we can do is keep getting up in te morning and making the best of what there is.

  • Oh Karen, I can sympathise with you on this.

    I'm having an ok day at the moment but my joints and muscles are hurting me. I don't know if about you, but I Find that as much as my hubby tries to understand what I'm going through, he hadn't got a clue.

    I find sitting outside with a cuppa fir a while helps the spirit as I can feel the sun on my face or hear the wind rattling the leaves on the trees, just a bit of escapism.

    I also treat myself to having my nails done, it's not much but it gets me out of the house and cheers me up.

    I'm with you on the sleeping issues, recently been getting exhausted after doing very little. Keep being told to listen to my body and rest.....never been very good at listening or resting.

    Chin up hun, we're all here to support each other. Will check in later to see how your doing.

    Jo xx

  • Hi everyone, feeling better this week i just have to accept that I can't do as much any more. I have come to the conclusion that if my bodies happy resting not doing very much my head isn't (get down and fed up). But when my head is happy getting on with things, boy oh boy does my body tell me it's not happy. I have just to find a happy medium. Just read that back sounds bit muddled but I am sure you will all understand where I am coming from. Hope you are all ok this week well as good as we can be much love to all xxxx

  • Please dont feel so down. You will turn a corner soon. My thoughts and prayers are with you x

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