Hello all.
Well, I have managed to get back here at last. Have had a very busy time with Neve home on holidays for six weeks. Never before have I been well enough to ‘do’ the holidays with her. Usually she has had to be in child care as I have been too unwell to manage her at home the whole time. So we have had some good times together watching movies and playing lot’s of Uno. She has now gone to Grandma’s for a week and I am getting a rest which is good as I am now quite exhausted. Neve returns to school on the 29th January. I will be glad to get back into the usual routine even though I have enjoyed her.
RA wise, I am still doing okay although I have had days due to overcast rainy weather where my joints have all been going off. And I am very tired, as I have had a very busy time in the last six weeks. In general though, I would say that I am doing way better in general than pre Rituxan.
Would have to say though, that in the last few weeks I have been feeling somewhat depressed. The chronic nature of this disease gets to me…it never really goes away…never really allows me to get my life back to something I want…the constant management even when drugs work, still I can’t seem to get my life to a place where I don’t feel the chaos that RA creates in a life. So I am really struggling with this at the moment.
I keep thinking things like…will I ever have a remission…will I ever get to a place where I have enough energy to write again…will I ever get somewhere where I can have a social life again…or will I just go through years of pain and then die young. Is this all I have no?
To all who have reached out to me in recent weeks I am sorry I haven’t answered…I just can’t talk when I am this depressed. I withdraw and insulate myself, which just makes it worse, of course, but I find it difficult not to do it still.
I try and look at some of you who have suffered many more years of this disease than I have and think that I will survive but it is so difficult not to lose hope.
Thanks, Katie. Yeah, I am proud of what I have managed recently.Cordy...First~ Welcome back. As you can see you were missed.
I'm sorry your'e feeling so low. I think you have to just take one day at a time and don't expect too much too soon. I know you're gratful for the time with Neve, being able to do regular kinds of things with her. Focus on the the good things that you have right now, the other things will come back in their time.
You've had a very long painful wait to get back to where you are right now. Don't miss the joy in that, Cordy.
Thanks Link and Katie, you have both really helped. On top of everything else, I have the period from hell too at the moment, which is making me feel very fragile on it's own. I wanted you to know you are in my thoughts and prayers. You are very dear to many of us here. If I can do anything for you, please let me know. I'll write more later, but I must go rest for a while. Take care, Sweetie! Much love, Nini Welcome back!!! Sorry you're feeling down. I hope it's not too presumptious of me but I just wrote this song and thought it might lift your spirits a bit...wish I could share the music too, but here's the lyrics. It says a lot about my journey, and my hope for the future. I hope you can find and hold on to hope for yourself and your daughter...it's definitely worth the effort. Spirit Dwelling By Alan Duncan As I wander helpless, on life’s narrow path, Blinded in the darkness, fearful of God’s wrath, Nearer now I’m drawing, closer now I feel, Warm breath of your presence, draw me nearer still. Spirit dwelling, heart compelling, Draw me to your rest, Spirit dwelling, grace availing, Make of me your best. As I struggle blindly, with life’s grief and pain, Hopeless in my anguish, fear and doubts remain, Blinding light surrounds me, pain and sorrow cease, Holy Spirit touch me, fill me with your peace. Spirit dwelling, heart compelling, Draw me to your rest, Spirit dwelling, grace availing, Make of me your best. Love flowed down, engulfed my torn heart, Cast away my fears, Mighty God revives my dark soul, Dries away my tears. Spirit dwelling, heart compelling, Draw me to your rest, Spirit dwelling, grace availing, Make of me your best. Now my soul is seeking, power from above, Now my soul is resting, in my Savior’s love, Never more I wander, never more in pain, Nurtured by His Spirit, in His love remain. AWWW ALAN!! You have a way with words, that was awesome. Cordy, I hope Alan's song put you at peace as it did me. Better days are ahead. Hang in there! Hi Cordy- So nice to see you back here again but sorry you have been feeling so down. I'm glad you had some time to spend with Neve, she must have enjoyed it so much and that in itself is something to be proud of. Its definetly the quality of the time you had together and not the quantity. I forgot its your summer and was wondering how come the school holidays were so long, its like our kids summer in july when they have nearly 7 weeks off
I really hope you start to feel better and the meds will start to work wonders. Take care Lisa HEy Cordy! Oh my gosh, you were the person that pulled me out of a huge slump, always there to help me perservere. Can;t help ya much about the cramps, had a hysterectomy at age 21, nothing helped me through that as it was endometriosis.....wished I could give you some hints on what works. THe chocolate, salty and heating pad sounds like a good start though! This cold weather is something else on the ol' RA and depression, well it goes along with it. THe best thing I know to do and is not much of a help prob, is I work through the pain, first by resting with a heating pad and lots of pillows and lots of blankets so I am all nestled in. WHen I get the strength, I clean, I mean deep clean. THen I rest some more. Sounds weird but then again I guess I am a bit weird. I am thinking about you often and sure wished I had some wonderful cure for all you are going through. Just know that I have been in your situation. IT is rough when you cannot be with yoru children, for me that is part of the depression. Just know ( as I do) that your child is safe from harm. You will have the energy to care for Neve again soon. I am so glad you wrote on the board.....you are greatly missed cause you are such a wonderful person and so supportive of others. jode Hugs to you. I hope you feel better. You are so right sometimes just getting it off your chest helps. Good luck to you and sending out healing vibes your way. Hey Cordy,
Glad you're feeling a little better, depression is so unpredictable.
I'm so glad you touched base with us. We were going to hire the Scooby's as a search party! hehe The Rituxan is working for you and that is a glorious thing!! I think it's so awesome you were able to spend the break with little Nevie and I'm sure she was happy to be with you, too. I'm sure you need a vacation though; these kiddos can wear you out! As for the depression, well... I think we're all there at one point or another. This disease is extremely frustrating and can be such a downer at times. Just know we are here for you when you need to talk (and talking can work wonders!!) "Sometimes in our lives we all have pain Lean on me, when you're not strong Hi Honey Are you using the software? (just guessing with the paragraph spaces). Its really good, did it take you long to train it? Nevie will have loved having you 'willing and able'. Make sure you rest up, the washing can wait!
S.x Lots of hugs and good wishes coming to you Cordelia; you were one of the first to welcome me to this board way back in December!! and I've been looking out for your posts. I'm delighted you have been able to spend so much quality time with Neve - you must be exhausted now so while you chill out and recuperate you can reflect with a big grin the fun you 2 have had these past weeks. Depression is no fun for any one and coupled with pain must make it so much worse. Thinking of you - chin up, big grin and know you are loved!! PS I too loved Alan's song ( made me a bit weepy but sort of calm...) Dee
Cordy!! Missed ya's like crazy!!
Alan, you can always through a poem or song at me...I find your stuff always inspiring and comforting.
Hugs to all of you.
We all have sorrow
But if we are wise
We know that there's always tomorrow
And I'll be your friend
I'll help you carry on
For it won't be long
'Til I'm gonna need
Somebody to lean on"
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