Alone and Afraid…

worriedAlone and afraid…these two words were written in a CRPS Facebook message and these 2 words have stayed with me all day.

I guess I really want to try and put my finger on what I feel on a daily basis and that is exacactly it – Alone and Afaid.

Please don’t get me wrong I have an invaluable support team of wonderful family members and wonderful wonderful friends all of whom I cannot get by without. I also know that I am luckier than a lot of other people that don’t have such great people around them. I also hear of horror stories of losing friendships over this illness. I pray that this will never happen and I also pray that if I become to much of a burden or a depressive mess that “My Girls” (you know who you are!) will be brave enough to tell me so that I can give myself an attitude adjustment.

I do spend an awful lot of time alone and once I probably would have spent too much time in dissecting and dissecting my thoughts over and over but for some reason I think I have realised that too much time on idle hands could be a problem. I stay busy, my physio exercises, meditation, exercise, hydrotherapy, all day food preparation for dinner, card making and small amount of household chores really do take up most of my days. The days that my personal carer doesn’t come to shower me, I do try to do without a shower if I am not leaving the house. The shower is just such terrible terrible pain and once you have done it, the pain stays that way all day and progressively gets worse on some days too. The whole idea of the personal carer is that they do all the work and the main reason is that they continue to talk to me during the shower which diverts my brain from the pain. It works most days unless like on Wednesday (with my lovely regular lady on holidays this week) they bring a trainee to shower me. This caused a huge amount of stress therefore causing a huge amount of pain. I did hear the trainee say she would be back on Monday to clean (but thought she would be coming with my lovely lady) but today she turned up on her own. She isn’t far out of school, scared, and completely inexperienced with no people skills what so ever. I turned her away, apologised profusely said that it was my fault not hers (which is completely true) but she still seemed to have lost her voice. Unfortunately if they continue to send inexperienced people – I can cause the same amount of pain doing it myself.

Having the personal carer come in 3 times a week really has given me an awful amount of “Piece of Mind” and I can’t quite put my finger on it. With my lovely lady she is just so intelligent and when she sees me in terrible pain, she just takes care of the situation. She leads me back to bed, asks me if I want a cuppa and a sandwich and she just does it. No questions “Where is it…I can’t find it…Did you say you want??? Oh it is such bliss when you are not completely sure of your own name by this stage..let alone making decisions. Piece of Mind.

The “Alone” comes in with my condition I guess. CRPS. It is a rare disease – it is difficult to find others in the same boat, that are going through similar problems. I have found a wonderful group of really supportive people on the RSD Oz forum and they have been a tower of strength for me and my million questions. When the computer is shutdown and you couldn’t access it even if you wanted to because of the pain is when you feel alone. Of course that is before it completely takes over “Mindwipes” you. No amount of friends and family can help you with that feeling and I know that they wish they could. I think for me it becomes more prominent also if I have had a rare good day and socialised with others, perhaps a party with people that haven’t seen you for a while – I know they are feeling awkward to some extent with me but when I come home I feel like I just have nothing in common with anyone anymore. More than happy to talk about you but I don’t even know where to begin if you want to talk about me.

Afraid. All day. Everyday. At least once a week I am presented with something new and it scares me – I don’t know what it is and I don’t know what it means. Two weeks ago I started losing a lot of feeling in my good hand the right one. Pins and needles most of the day. For months when I walk my legs are numb, if I walk for a bit I am just trying to will one in foot in front of the other but I can’t feel them. Last week there was a rash behind my left knee (it’s still there) and yesterday I have chicken pox type of blisters on my left leg and right leg. I have had these blisters on my bad hand before but why are there so many and on both legs. What does it mean? I don’t deal with change when it comes down to this condition. I am afraid of it and I fully understand what it “Could” do to me in the future and if I allow those feelings to come up out of the very large box I have them stuffed in to – I am very very afraid and I don’t know how to conquer that fear and this fear make me feel so very alone.

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4 Comments (+add yours?)

  1. stinam
    Mar 24, 2013 @ 12:13:53

    Hello! I wanted to let you know that I’ve nominated you for the Versatile Blogger Award. Don’t feel obligated to go through the acceptance steps, I realize that life gets crazy. I was more interested in sharing your blog with my readers because I love it so much. However, if you’re interested the details are here: http://stinasjourney.wordpress.com/2013/03/23/who-doesnt-like-the-occasional-pat-on-the-back/

    Reply

  2. mybeautfulthings
    Mar 25, 2013 @ 02:38:12

    I am so moved by your post. I just want to send you love and some virtual (()hugs))).

    I think you might like one of my other blogger friends, Robyn Lee of http://throughthehealinglens.com/2013/03/23/pain-shadow-on-exhibit/

    Go over and have a look and tell her I sent you! Thinking of you with love
    a 🙂

    Reply

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