I am having a pity party, and know you will understand.
I hate this disease, I hate what it has done to my life and the people in it.
I am on the verge of asking my oh to leave me and let me get on with it alone.
I hate to see that he's not coping with the new me...the one that has no energy, is in pain that never really leaves.
If we could all be in a bubble where all we have to do is survive this disease,and not have to cope with all the other things that life throws at us, things maybe a lot easier.
Unfortunately, all the other crap still happens, and it leaves me feeling inadequate.
I need to find strength from somewhere, but can't see where to look to find it.
I am so much better off than so many of you on this forum, and I admire your tenacity and drive to keep on going, but this is me, with all my flaws and weaknesses laid bare, and I don't like my self pitying self at all.
None of us lead a charmed life, so maybe I just need to grow up and get on with it, which I am usually able to do.
Just that now, it's all packed up and left me to it.
Sorry to grumble, I love the positive posts on here, and empathize with the not so positive...just need to find the strength to keep fighting
Thanks for listening.
Nic
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elsa123
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20 Replies
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Hello Nic
I know how you are feeling and have written a blog in response. You are down now and you will wallow in that for a while. That is allowed. Just remember, you will get up. xxxx
Nic, we all feel like this more often than you'll know. When we're tired and in pain we take it out on those closest to us and that usually means hubby. You're allowed to feel like this. This disease robs us of so much, it's perfectly normal to feel "why me" from time to time. The constant pain leaves us so very tired - excaerbated by the tiredness already present - that sometimes we just can't see how on earth we're going to find the strength to carry on.
But carry on we must and carry on we do because no matter how much we want to we don't give in to the enemy within.
When you're calm and rational, try and sit and talk to your oh. Maybe download The Spoon Theory (google it) and ask him to read it. Explain to him that you're still you but life has thrown you a curve ball. Nothing is insurmountable if you work at it together. But try not to push him away. You need him and, although he may not realise it, he needs you too. His life has been turned upside down too.
Have a good cry. Scream and shout. Punch the pillow (if you have the strength!) then wipe your tears. You WILL get through this but don't ever think that you're weak, flawed or self-pitying. You're normal. You're angry, you're fed up. And you're tired.
Have a good sleep. Everything looks better in the morning xxxx
Hi Nic, I agree and hate it too but remember that how you feel today will probably not be how you feel in a week or a month. All I can do is say I understand how you feel and offer a warm virtual hug. I hope you can find the strength to keep fighting but if you continue to feel down don't bottle it up and perhaps also talk to your GP.
it's not a pity party - it's a natural response to realising how everything is. now the healing starts. I know that sounds strange, but now you are learning what gives you most comfort - physically, emotionally and mentally, and be gentle with yourself.Tears are very healing and will catch us unaware, so let them out.
O.H.''s find it hard to know what to do [some don't care] but if we don't know what we need, how would they? be gentle with yourself and take it day by day. regards, sandra
It's also worth remembering that feeling emotional and down is yet another fluctuating symptom of this disease as much as pain in joints. Be kind to yourself, and allow other people to be kind to you as well.
Nic, we don't have a choice with this dratted disease. We have to carry on,god knows how we do,but we do. I have always said god only gives what he knows we can cope with, and yes i have often been in a place where i wonder that. I am not a religious zealot, but i do believe in a god. You just put one foot in front of the other thats all you can do. I feel all what your saying and more. As you can probally see its silly o'clock in the morning and i am down here in pain as normal
I hope you can have a restful nights sleep and when you wake up in the morning and wipe your eyes you will feel different. Sending gentle hugs your way. Love sylvi.xx
On an earlier blog, we discussed Depression. It is caused by a chemical imbalance in the brain. One or more of the chemicals your brain produces, mostly while in deep(REM) sleep, is running low. So you are getting the result of that, and thus you are unable to deal with so many things happening. That missing chemical needs to be replaced and that is what an antidepressant does. You need to call your GP, or go see him and describe how things are.
If your hubby were the one with RA, and he told you to go ahead, leave, have your own life and leave him alone...Would you go?
Try to get extra sleep for a while, good, deep, dreaming sleep. See if that helps. But really, first, contact your GP. You have the right to have what is needed to get all the help you can. It will come. Things will settle in and take their place in life, and you can go on and live a healthy, active life, once the right meds are all in place and working. All the best, Loretxx
Hello elsa123, 1st time you've heard from me & it won't be the last, hopefully? I and many others to feel/felt exactly the same as you, on many many occasions. But sadly we do not have the ownership of those feelings because, we are human. We suffer terribly most of the time. But please try to think of those unfortunate people who are suffering much more than we are. I am on Morphine, and i thought " well that's it, nothing left for me now" contemplated suicide, pretty negative i know, but very honest. Today still on Morphine, but still coping and still fighting. Moral is DO NOT GIVE UP to this horrible illness, we don't need it, did not ask for it, we just HAVE TO cope with it. I enjoyed your we gripe it's so familiar. keep talking about it, express your feelings and start to get what you can get out of life. But Please DO NOT GIVE UP. Would you be so kind to reply and let us all know how you are keeping as we are all interested to know. Thank you. Take care weemikec
Hope today continues to pick up for you and you feel a bit stronger.Have you thought of suggesting that OH contacts NRAS about him coming to terms with you having this disease? They have some stuff for family members, and it might help you if you knew that he too could offload somewhere? It is a foul disease, and I know that my OH does really struggle with the impact it's had on us from time to time, and we've slowly found ways to deal with stuff together and adapt to a new life, but sometimes it's still hard. You must be feeling really awful if you think it would be better alone, so do try not to let this wreck your relationship as you will stillbe able to have a good life together, just maybe not quite the same as planned. And if you can't talk about it together yet,then at least try to make sure he's not bottling things up too much. Polly
I picked up on the "verge of asking my oh to leave me"...
You shouldn't be the one to decide what someone else should do or not do. It's up to him to decide if he can't cope - yes it's difficult for him too, but don't let your anger about the disease affect your relationship with him. If he can't in the end adjust to the new you, then he may have to go, but he has to take his own decisions. The anger about the disease - I know it spills out in all directions, I try very hard not to let it and spend lots of time apologising afterwards - but don't let the anger destroy a relationship - the disease does that all too effectively by itself!
i now how hard things can get , i am having a bad week, it so hard to keep going , some times, i keep asking why me, then look on her, and see, so many of us with this disease, which helps me , being able to have a good moan on hear, to ever one who nos how you feel , you take care, Elsa, Joanne
I really feel for you and hope you have some better days and soon. It is a horrible disease and one that I am still very angry about and I can't accept it or let day to day happen yet.
It is very frustrating going from a busy person to one that has to plan what you can and can't do. Maybe if you have a chat to your GP to tell them that you are feeling this way and if they can help..I know it might be yet another tablet but if it helps why not. Take care xxx
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