I have been sitting for the last 1/2 hour. Crying.
I am in too much pain. I have taken all my meds as I should. And yet nothing is helping me.
I was Diagnosed in 2005. Started MTX, that helped and I went on my merry way. Stopped taking it as I could no longer afford a Rhumey at the time. Flash forward to May 2007. I move house and the next day have a massive flare that put me in hospital. My right knee locked up and I couldn't move at all. (This is where I meet my current Rhuemy who is brilliant, so it was not all bad news.)
Since 2007 I have tried (and failed) Sulfasalzine, Arava, and Embrel. I am currently on Simponi.
I had my montly injection yesterday, and usually the next day is my best day. I feel great. Not today. A combination of awful weather and not sleeping has leef me feeling all washed up and alone.
A fight with my 9 year old didn't help. I know I shouldn't yell at her, but when I am in so much pain, even after the pain killers. I can't seen to help it. I even went to get some stronger than over the counter pain killers recently,, from my GP. Even they are not helping me at the moment.
So here I cam crying. So sick and tired of the ups and downs of this stupid body I have been gifted. Afraid if the good times as I do not know how long they will ast. DReading the bad times and yet still hoping that there will be no more bad days.
You have come to the right place. You can vent here with no judgement and lots of support. i am really sorry you are going through this now. I know how alone and painful this journey can be. Do you have anyone you can talk to? Any important support people in your life? I know having some one to watch your kids and take some time to yourself can allow us to rest and recouperate a bit. I always enjoy a hot bath, a book and a nap when I am running on empty but perhaps something else would work for you. I use to keep a list of things to do to refresh myself in the book I use to organize myself. It helped when I was so tired I couldn't think what to do even if I had a moment to myself! If you have no one in your life you can speak freely to please think about some therapy or a counselor. It has made a huge difference for me at various times with this illness. My husband is very supportive but sometimes I modify what I need to say as I am afraid it will make him sad to hear what I am going through. So for both our comfort I see a therapist for weeks or months If I need to work something out. I am sure you will find a path for yourself. You are a smart and thoughtful person. I will keep you in my thoughts and prayers; as this too will pass.
I found that coming to terms with this disease was a giant step. Accepting this is how it is going to be from now on is not easy but far easier than trying to fight it and let it get you down. I needed to be able to know how I can make the most out of my life with the restrictions this disease puts on my body. Then I thought about what can I do to help me cope each day and the extra things I can do ahead of time so I can cope on the really bad days. What has to be done and what can wait was also part of my strategies. What things might I need that will help me cope.
Sorry you feel so down, thinking of you, and can I say…don’t be too hard on yourself, when we’re in pain its easy to snap, your daughter will understand if you let her x
I am feeling much better today. I hauled myself to my GP on Thursday and was diagnosed with BOTH a viral and a bacterialogical(sp?) infection. I was gived two different kinds of anti-biotics to take. No wonder I was feel so awful last week. The lymph glands in my neck we swollen up so much it hurt just to open my mouth.