just need to confide

hi,

im a little nearvous about writing this blog as I know it will sound so trivial, but im struggling with my lupus symtoms, mainly fatigue. I used to be a work-a-holic and work 50hrs+ a week,be a good mum and wife but since I became poorly in 2005 my life has dramatically changed; I have to plan my day as I can easily run out of spoons and have to plan where I go so to avoid sunshine (it makes my symtoms worse) I cannot plan ahead as some days I wake feeling so ruff that I cannot get out of bed, my hair was once lovely and thick and now its thin and very grey (soz I know that sounds vain), my joints ache and I have to wear knee supports until bedtime, my migraines are becoming more frequent......but its the fatigue that's really robbing me of my life,i want to stay strong and watch my children grow up,i don't want to be a burden to anyone. I am so angry, I yearn for the pre-lupus me,im a shadow of who I was thanks to this hiddious hidden wolf within me.

I do my best to work as many hours as I can especially now we are in recession as who would want a knackered work horse? im lucky to be employed and im grateful but its a struggle to keep going,im so so tired,tired to my bones. I do nothing but cry, hate living like this, its exsisting not living. im told I look well but what the beep do they know?!!!! I put on a brave face as we all do and switch on my auto-pilot so that I can earn a little to support my family. im worn out,just want to sleep forever......but I know my kids need me so I wont do anything silly.

sorry for such a shitty blog but I need to talk to someone,my hubby is great but I cant explain how low I feel as he doesn't understand bless him.

thanks for listening, caninecrazy x

3 Replies

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  • Hello

    You are not alone I have had problems associated with a uncommon type of arthritis, this tires me out so I am unable to fulfil what I want too do in life, I have been ill with extensive chronic pain now since 1985 and since then have been medically retired because of it, all I can say is we all have to live with the discomfort and in a certain way it can be very lonely especially if those are close to you do not understand, sometimes not want to understand. Especially if the condition does effect our mental health.

    Generally life becomes hard, we become insular in our life choices and move away from society that prefers not to understand conditions that we suffer on a daily basis.

    When we are less able we are lucky to have family, this becomes a blessing that many able bodied do not have.

    Later in life a close knit family will bring an environment of love and generally help with your problems in later life

    With regard to your condition LUPIS if you are suffering pain could you not visit the doctor and ask to visit a pain clinic.

    They will give coping skills and explain what you can do to to suppress your illness.

    Sometimes it may be useful to have a CPN who would let you talk and get problems off your chest, someone who is not attached to your family and give you an objective view of your conditions. This can possibly give you an understanding why you are feeling the way you are,

    Many of us with corresponding illnesses have problems with mood change, also depression, life is so very difficult when we feel unable to cope. If we are given those skills that will at least help us understand what or why is it going on allows us to control and accept the problems we have.

    Further things you can do is voluntary work, associated with your condition I did this and the amount of support I was given allowed me to reciprocate that back to other members. Support by those who understand your condition can really help in giving you the strength to continue on with your life.

    If you can manage to do above it is worth more than any NHS treatment available and is so rewarding

    So I hope that you can realize that life still has so much to offer us if we grasp the nettle and realize that we are wanted and loved by our families

    All the best

    BOB

  • Heya. First, there is no such thing as a trivial sounding blog. Far as I'm concerned, if it's important enough to you to write about, it's important enough for me to be as supportive as I can. Although why you thought the effects of lupus would sound trivial I'm not sure!!!

    I really relate to feeling like a shadow of yourself. I remember a me before I had depression, and I often feel like an echo of that person. And it's not vain to be affected by changes to the way you look. There's a whole litany of studies on the link between how we present physically and our self-motivation, it's natural to feel affected. I also get very tired because my depression affects my sleep, it's probably nowhere near as bad as for you, but I do understand that feeling that sometimes it's just all you can do to get through your day, there's no energy for anything else.

    BUT - try to be kind to yourself, and not beat yourself up over all this stuff. It's the effects of the illness and it doesn't reflect on you as a person at all. Sounds like you've always worked to the best of your abilities, that hasn't changed, it's life that's changed what you're able to do. It sucks and I really feel for you - but you're still an amazing person despite that. You've been kicking against your condition for 8 years to support your family, that's actually kind of inspiring to read :) give yourself some credit as well and try to enjoy as much as you're able to do.

    Lots of hugs, I hope tomorrow is a good day for you :)

  • thankyou bob and themysciradrive for your kind words and understanding. today was a slightly better day and I managed a whole 4 hours work :) thankyou x

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