(((((((((((Jen)))))))))))) whine away, I think we all have these thoughts sometimes. Especially when you were so very very ill.
You have done amazingly well to achieve what you have recently and it took a lot of (pardon the expression) guts! Your situation then and the severity of your disease is relevant here, you are by no means 'all fixed' and who better than us to realise that. Just because we 'seem' to function ok it doesnt mean it's not a humungous effort on our part and a constant battle with psych and body pulling us this way and that. It's takes a thousand times the effort someone else who hasnt got a chronic illness to acheive.
Are you getting any 'me' time at all? I think that might be important to try and squeeze some in. Going to work and running the home is very demanding and exhausting. But somewhere along the line you need to do something for you that pleases you and relaxes you and makes you feel good. If you can do that somehow then maybe things will feel a whole lot better and you won't feel like you are just existing and all you ever do is go to work, and do more work at home.
Sending hugs, Jen it's good to hear from you again, but do cut yourself some slack. You deserve it !
I really felt for you reading your post. :sad: Im so sorry you are feeling so low and tired. Jen, if this has been going on now for a month or so I think you need to see someone about it. You could be suffering from depression and if so then you can get some help and support with it. It sounds to me like you could benefit from some sort of counselling to help you deal with the worries you have about the past effects on your family. :hug:
The other thing to consider is whether you have actually taken on too much. I know you were very excited to be able to get back to work, especially as you had been so ill in the past, but you have to remember that right now your disease is only being 'controlled' by the use of a powerful drug, Rituximab. That's bound to have effects on your system - including the awful fatigue that people describe which comes along with it:hugbetter:
Jen, we all know you are not 'fixed'. If it helps please keep posting and at least here you will have people who 'get' how you are feeling. Im guessing you feel disappointed with yourself but none of this is within your control. Dont be too hard on yourself. Your needs are important because if they aren't met you run the risk of getting very ill again. Maybe you need to reassess again what your limits are with regard to work, etc?
Life can be downright unfair sometimes You deserve a good whine so no need to apologise :hug:
Much love and respect to you. You're an incredible inspiration to me and I know lots of others. Give yourself a break, okay?
Wonderful advice has already been given, and I can't really add much to it other than to say I understand what you mean. Whenever we spend too much time looking back at the past, especially a bad spot of our past, it tends to not help us now or for the future.
You may be pushing yourself too hard to make up for that bad patch - maybe you need to take a little vacation or something and get away from it all as much as possible.
Dear Jen, I can't add anything to the excellent advice the others have given, only add soft hugs and wishes for you to find peace and comfort. Have you thought of seeing a therapist? Sometimes being "weller" puts as much stress on us as being "sicker". It's all just a long line with us falling at different places along that line at different times. You are so far from "fixed." You still need care and tenderness. I hope you are finding it and if not, then giving it to yourself.
I just wanted to offer my support. The others have given you excellent advice. It's only natural that you feel low from time to time after all you've been through. I remember reading how ill you were at times. You've achieved so much and it's night and day from where you were at before. That in itself can leave a scar and those with chronic illness' can suffer from post-traumatic stress.
Maybe you are trying too hard to prove to everyone but mainly yourself that you are back on track. Be honest with your family sweetie, you may find that they had no idea how you were feeling.
As Lily said - some 'me time' can work wonders. Just getting some quiet time to read a book or have a bath, whatever you might not normally get the chance to do. It can work wonders. I tend to look at everything as a whole which makes me put huge pressure on myself. I've learned to break it down and look at what I can achieve today, tomorrow or maybe next week.
Thankyou all for understanding me, I very much bottle things up, and know that I have been doing so lately, it feels much better to get it out, and you of course understand.
It is all a humungous effort, I wake up every morning and feel like there is a mountain to climb, only I don't yet know how high or how hard the going is going to be.
My GP recently prescribed amytrip as I think the all over pain and disrupted sleep and absolute inside out tiredness (think that's the fibro stuff) has to do with the low feeling, I am dancing around actually saying that I feel 'depressed' I'm not sure whether I do or whether if I can get on top of the pain/sleep thing life will look a whole lot rosier.
You are all right, and if I were talking to any of you I would be saying the same thing!
I am really proud of what I am achieving, and proud of myself, but you're right I need to cut myself some slack, which goes against my instinct to be tougher and more demanding on myself than I would ever dream of being to anyone else, and that does include doing the proving myself thing.
It is scary to remember the awfullness of life before rituximab, I have this horrible fear of having it all snatched away from me. Despite the uphill struggle that some days are my life is good in a way that I could only have dreamt of before.
I had rituximab on Friday, and a steroid infusion as well, so I am sure that that will help.
Thankyou from the bottom of my heart for being understanding and supportive, here's to the better days I'm sure are ahead.
:lol: Lily, it was Ben&Jerry's frozen cherry yoghurt (with chocolate chunks!) that did the trick, (or maybe it was the steroids :rotfl: )
Anyhow, I don't just come here to be whiney , so thought that I would share that I have mostly bounced back :bounce:
Pain, fatigue are much more under control and 'doable' after fiddling around with amytrip and tramadol, and I think that I need to be having rituxan every six months, it definately works for me, my brain is coming back which means I am functioning way better, and as a result my mood is supermuch better. I do feel sadness at the way stuff is sometimes, but not the dark pit of feeling despair. You can after all only ever do your best, and I have always done my best, be it the best times or the very worst. It does mean that in the best times everything is so much more fabulous for the times that are the worst!
Oh. Jen, I'm so sorry. I know the feeling and feel free to vent. I've missed you and everyone so much!! I'm so glad to hear that the Ratuximab is working for you, but also know how that dragging feeling is.....we manage to carry on in our own ways. We do the best we can, when we can. If I only had that magic wand. Hugs to you.
Love -- SusieBB
1 - 17 of 17 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.