Pushing the boundaries

So cheesed off with resting...rattling with tablets...donning hot water bottles and sleeping on vibration plates!!!

I occasionally get some energy...mostly due to the frustrating circumstances...I'm told to rest!

Well what if I use this pent up energy and I go for a run...or do something unheard of like dancing the night away with a glass or two of fizz?

should I be scared it will hurt me? It bloody hurts now and I've only walked about...think I need to take control as this " thing" is trying to control me!

If it was human I wouldn't stand for it so why should I listen...do I risk further pain? If it means living...then why no??!!

So not happy today...my legs are cracking to the point I can't walk...tomorrow voila I can walk ( although had no sleep through pain itching and discomfort ) people used to ask me for help...rely on me...now I'm " best resting don't want to cause you unnecessary pain" so frustrating ...fuming...gutted...can't speak out loud so sorry you lot are getting it instead :-(

if anything, hopefully anyone feeling the same will feel free to rant...coz ranting is ok done the right way xxx

Love and gentle hugs xxx

5 Replies

oldestnewest
  • I'm sorry to here you are feeling this way. 😔 But you are so not alone. The last few days have just been terrible. I have times I cope with it all better and then other times that I can't stand it anymore. I too was always the dependable one, everyone came to me for help and I always loved how independent I was. Well I am no longer any of those things. I had to quit working in December as the lupus has progressed so much. I haven't been able to even go grocery shopping by myself for about a year now. My poor husband is so wonderful but I feel so bad because now he has a wife that can't do any of the things I have always done our entire marriage. He tells me it's not my fault and he's happy to take care of me. But sometimes I wish I could still take care of him. And our dogs. I used to wash them, groom, and everything now I can't even walk around the house some days. The last 2 days have been incredibly bad the fatigue and exhausten have been so bad I hardly feel like I can stand up and taking a shower this morning took everything that I had. My pain has been so terrible that the meds aren't helping so I've been spending the day using a heating pad and trying to sleep because I feel like I can't keep my eyes open. But I can't sleep well either because of all the pain and other symptoms.

    I am still so greatfull for the life I have and for a husband who is supportive and understanding. I know I am truly blessed, I just feel like I have lost so much of who I was this past year and half. My entire life has changed. I have come to the point I do ok accepting this new life, and am happy for the good things but then there are days like these when I'm just so tired of feeling ill all the time and just want to be able to do simple things again. It's also very hard not to feel like a burden or as if I'm depressing to others. So I try not to tell all the non lupies about just how bad it is.

    Anyways I guess I started ranting too. I just wanted you to know you are not alone, hang in there I understand your feelings and am so sorry you are going through this. Some times I think this is just we need to be able to share how we are feeling with someone. I hope you start feeling up soon. :)

  • Hi terror lady just read your post you mentioned how good your husband was how you feel bad about him doing every thing I am In the same boat he retired last year I feel so guilty there is so much we could do together if I was we'll I am in pain most days have very bad mobility ulser ated legs my husband is very good to takes care of all shopping andse house old jobs what I can not manage we also have a dog which he takes out we are blessed but on a bad day it is easy to get discouraged to everyone who is having a bad day today don't be discouraged always tomorrow might be a better day

  • I can really sympathise with you as your symptoms are almost identical to mine! This condition, apart from being very painful and debilitating, is extremely frustrating.

    I am a upper middle age man who, until 5 years ago led a very active life including an annual mountain walking holiday with old friends.

    The first I knew there was something wrong was the fatigue on one walk which hit me suddenly. I had no breathlessness as with usual tiredness, It just felt like my batteries had gone flat! Weird! I found that the fatigue just continued then but it wasn't for another year until the pain and other symptoms arrived, along with Ulcerative Colitis (quickly diagnosed). The SLE diagnosis took Couple of years longer!

  • Hi there Gill, I'm so sorry that life is so difficult for you at the moment, and of course no-one knows how you might be in 2 weeks, 2 months, 2 years - could be much more positive, let's hope so. My experience of lupus is much 'quieter' than yours so any suggestion I make is from that point of view. But I've found that if I manage to keep my weight down (not good at the moment in these winter months), don't drink alcohol to excess, get fresh air on a daily basis and take some sort of exercise - I do feel better if only in my mind. I do yoga which the teachers say is helpful even if you only think of your muscles doing the moves, and go to the gym just using the cycle and walking (not running) machine. For me it's like, if I've done something, however small - I feel better about myself. Good luck.

  • I don't have lupus, but have, as yet unconfirmed raynards with additional complications and have had melancolic depression for a long time - one of the things that really helps me is to write about my experience of returning to 'my version of normal' - its not particularly great, but its so much better than the depths of despair I can sink into. When I'm in a lot of pain and feeling both psychologically and physically unable to do the simplest things, reading my own words gives me encouragement, being reminded that I've been there before and was strong enough to get back, remembering that it always eventually passes and I find some relief, even if it only lasts a short while, has, I think quite literally, been a life saver.

You may also like...