Life with RSD – A Life Worth Living?

Disclaimer notice.

This blog page talks about a mothers struggle with severe depression and a

suicide attempt. This is a true story and is not for the light hearted.

Life WIth RSD – A Life worth Living? Not Always.

I wake up in the morning after another broken nights sleep where I have been awake because of pain or asleep dreaming of the pain. The only reprieve I have in the night is the dreams that I’m dying because it’s a comfort to know that there will be no pain then.

The dreams of dying have become a fantasy. How easy it would be to make fantasy a reality. Suicide is for wimps? Suicide is the easy way out? Maybe, but it also makes perfect sense when we wouldn’t even let our animals live in this degree of disabling pain.

My constant thoughts, I will not be a burden on my family. I will not live this life to be somebody else’s problem. My husband and young daughter will miss me terribly but once I’m gone they can start to heal and live their lives again as opposed to my pain and disability rubbing salt in their wounds every single day. I only hold people back.

Watching my husband exhaust himself with full time work, household duties, caring for our daughter and caring for me is breaking my heart. Why does he not just walk away, I would if I could. Putting aside all my parental ideals and relying on TV, freezer foods and other people looking after my princess is tearing my heart out. If I can’t do this job properly, is it fair to do it at all.

I can’t do it anymore. I will not do it anymore. I’m only succeeding in dragging everyone down. I no longer care that by living out my fantasy there will be no life insurance to leave behind for my family. If you love someone you will set them free. That is what I am going to do, set all my nearest and dearest free. Just because my life is not worth living does not mean they should stop living their lives.

MST is my weapon of choice. There is no point in adding to my pain in the process, may as well see if I can take it away. My daughter is busy doing jigsaws in the lounge whilst mummy takes 5 strong morphine tablets at a time. Don’t want to take them all at once. I don’t want to scare her by having a violent reaction. Pace myself. Have a slower onset of symptoms and make an antidote more difficult to calculate. I start at 2pm and continue every 20 minutes for 31/2 hours. I’m doing this for her. My RSD has had too much impact on her life. A child of nursery age, should not have to ask Santa for mummy to get better. This is for her, isn’t it?

This fleeting question in my mind makes me think twice. Am I being selfish? Is this for my benefit and my release? Is there a chance, however small, I will get my life back and be able to live again, be a mother, wife and daughter again? Although this is all I have thought about for month’s maybe it needs some more thought. Starting on this journey has raised some new questions. But it’s too late isn’t it?

I phone my soul mate, my husband and tell him what I have done. Everything is out of my hands now. My GP is coming, an ambulance too. I need to get my daughter out of the house before these invasions. I arrange a friend to come and take her for tea, but still manage to make time for more pills. My GP and husband arrive and I lie about how many I have taken. I omit about 25 from the total. I’m still not sure in the least that I want to be an onlooker in this life of pain.

The ambulance arrives and takes me away. I’m monitored closely in the high dependency unit. I need a bolus of the antidote. A scary experience being brought back to the land of the living. I had less doubts heading in the opposite direction. All the morphine being removed from my system so quickly hurts. I have made a mistake, but was it taking the pills or summoning help. The pain is too consuming to think any more. I’m not saved yet, which is a comfort. The bolus wasn’t enough I

need an antidote infusion as well. What a waste of NHS resources when I would still rather be dead than deal with any more pain. I will just be repeating this performance in a faster acting way which won’t give me time for self doubt.

I get home and take 2 is all consuming in my mind. Quicker will be messier. No way can that be done with my cherub at home. I’m desperate for an opportunity when she is not at home. Due to a lengthy hospital admission for pain management (or suicide watch) and Christmas holidays this opportunity does not arise. A blessing in disguise.

The New Year brings with it the chance of a treatment which will reduce my pain and make life bearable again. My spinal cord stimulator surgery is scheduled for early January. By the end of January the successful surgery has brought my pain to a tolerable level. Life is worth living again and I have a lot of lost time to make up for. Thank you to everyone who has made it possible for me to be here to tell this tale. My motto and advice for all, keep fighting as you never know what the future holds and it may just be worth fighting for. It’s a gamble worth taking I promise.


5 Responses to “Life with RSD – A Life Worth Living?”

  1. Your letter truly was heartbreaking for myself. probably because of the similarities of the contents and having lived that just two short months ago. I did not g as far as you, but I struggled with the thoughts of how, when, where, as Im sure you did also. I am glad to hear that you survived and that you got a happy ending. Your family is very lucky to have someone that is as brave and strong as you. Living with RSD takes a huge amount of courage and strength, as you well know. I too am waiting on approval for a SCS thru wcomp. There lies another hurdle, one that someone who suffers from this horrific disease should not have to endure. One day I too will have my happy ending. Thank you for having the courage to share your story. Gods blessings!

  2. Priscilla says:

    Wow……Its so amazing to hear about people that feel the way I do. Suicide crossed my mind a few times……but I just couldn’t……the depression makes it even worst. Well actually I’ve become stronger over the passed 5 years. Its really difficult dealing with RSD let alone being a mother with RSD. Some how we have to find a way to live with it…. nobody will really understand what u r going though unless they have this kind of pain.

    Being a working mother with RSD is even worse. 2 weeks ago the left side of my body refused 2 work, but I pushed myself. My darling husband helped me get dressed and I took 2 buses to work. People were staring and talking but I knew I had to do this for me. A week went by and I was still in the same condition, but I carried on going 2 work. I will not let this pain get me down.
    I pray every day (4 us RSD suffers), that our pain will get better.
    -To the lady that wrote this letter…..u are a truely strong person. One day your daughter is going to be so proud of you.

  3. Lisa Moon says:

    Having had CRPS/RSD for 4 years now, I have sadly been here… and been somewhere so greatly removed from that place, for which I am very grateful.
    I have to say that when I was feeling this way, it was pre-diagnosis, NO medications, and NO idea what was wrong. All I knew was that this insane amount of pain which made childbirth look like a mosquito bite was taking over my days and nights and I was no longer rational. I wanted to cut my affected limb off. I’d fantasize seriously about it. Surely sawing off your own limb is nothing compared to this. I wanted to die if this was all my future would hold. At that point, I had nothing and no one suggesting that this indescribable pain would ever end or be controlled. The only things which kept me from hurting myself (or worse) was that I had a child who depended on me… and a best friend who spent as much time with me as possible, most every single day, holding me while I cried and shook in terror and pain.
    I thought I was going insane, truly.
    Then one day I received a message that there WAS something which could cause this much pain; it had a name: RSD/CRPS. Even though reading about it was scary, I suddenly felt like I had a chance to fight for my sanity now that I knew what I was dealing with!
    It wasn’t one medication for me, but a combination that’s taken time to arrive at (and I’m still working on slowly changing them, to get the most benefit with the least side-effects). This doesn’t take away the pain, but has made life more bearable. I can live with this, even though it’s very difficult.
    And the most helpful thing I found was to find others like me, for I felt so terribly, horribly alone, more than I’ve felt alone, ever.
    On Facebook, I was able to find many groups of people who live with CRPS/RSD and I made many online ‘friends’ who have given me incredible support, understanding, sharing treatments and personal stories… I think that the support of other CRPSers has done more for me than the medications ever have!
    To the author of this story, I thank you for sharing your painful, honest truth here with us. I felt such deep emotion – sadness and an incredible empathy to what you wrote. I understand and you are NOT alone.
    I hope you’re getting more support now. We deserve to have a professional (like an experienced counsellor, etc.) not to tell us we’re ok, but to help us cope with a very changed life, the feelings of loss and mourning our ‘old’ lives, and how difficult it can be when we come up against people (family to doctors!) who don’t believe us, don’t support us…
    I am SO glad you are here and made it through! My thoughts are with you, though I do not know your name, but I wish the best for you and your family.
    We CAN survive. You are STRONG. Please, go find other strong CRPS/RSDers; make friends, create a support network. Not only will it help you, but it will help your family, too (there are groups for the families of CRPSers, too!).
    Blessings to you and to us all.

  4. Gail Jones says:

    A heart wrenching blog of a mothers struggle with this terrible condition and the effects it has on wellbeing emotionly as well as the physical. It takes a very strong and caring person to cover a subject such as suicide in such an articulate,honest,open manner, and l thank you for sharing your story because it offers an unflinching insite into living with RSD and triumph over such adversity and suffering ,and hope for all fellow sufferers.

    Healing prayers to you . And know that you are never alone with your struggle.

  5. r weyrauch says:

    I have had rsd almost 3 yrs now,an its been a fight.I have a very good doctor with out him i think i woundnt b here.I have it in my right arm an had 3 surgerys on it an just found out that its in my right leg,i had a heel replacement yrs ago an rsd will affect an area that has been hurt.I feel lost all the time an sometimes i hurt so bad i foreget what i was going 2 do an thinking i have 2 live like this 4 the rest of my life.There is so much i miss i miss my job the most,I try not 2 think about it.My wife trys 2 cheer me up she has been there with me all the way.

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