Scleroderma & Raynaud's UK (SRUK)
7,262 members3,438 posts

ME AGAIN!

Hello everybody, I hope you are all as well as you can be. A slightly less busy week, just as well because following my Iloprost I have been feeling tired. Monday and Tuesday was my usual volunteer things. Thankfully my granddaughter came to see me on Monday after school, she has this effect of lifting my mood as well as passing on her energy! Tuesday was another blood test!! to see if I have an underactive Thyroid, if it is it will be another entry to my medical dictionary haha. Wednesday was a slow day, not just because I felt tired but because I felt down, sometimes living on my own makes everything ten times worse, so it took all of my energy to lift myself out of the hole I had fallen in, and I did n"t even use a spade haha. Visited the OT, to have a splint made to stop my little finger going into a spasm, and then my granddaughter came to tea, she makes a mean sausage casserole, oh and an apple crumble, mmm. Unfortunately the week has ended on a bit of a low, I went to the hairdressers, theres something about sitting in front of a large mirror to remind you that you no longer have lips and the furrows round your mouth look like a ploughed field, oh yeah and your hair is falling out by the brushfull!! I think Im going to do a Victoria Beckham and wear a huge carrier bag haha. Anyway, thats my moan over, sorry folks. take care, and remember, Smile and wave folks, smile and wave. xxx

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All the best. Love.

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Smile and wave xxxx

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Hello lovely lady, those mirrors that hairdressers use are lit in such a way that they would even make Victoria Beckham look rough! Whenever you go they seem to make you look like some alien, with a faint green glow and your carefully applied make-up look like a child did it!!! I am planning a nice pink bob wig if anything drastic happens to my hair.

Living with scleroderma is a rollercoaster at the best of times, but during the worst of times it would be strange if you didn't have a dip in mood. Also, the fatigue induced by Iloprost can cause low mood, which is incidentally also caused by inflammation in our bodies. So, when you have a flare of your scleroderma and have more inflammation then you will also feel depressed...just when you need that buoyant mood to help you deal with the horrors of dealing with a flare! I try to think that everything is impermanent...this too shall pass...and that what goes up must come down...but this also works in reverse.

Hold on in there...and don't expect that you 'should' feel ok all the time because then you beat yourself for feeling down, when you need to say to yourself something more supportive and do nice things to help you.

Lucy xxx

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Blessings to you. Keep your chin up x

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Hi I'm so sorry to hear about your struggle with life this week. Our lives are always changing and we mourn for the loss of what used to be, but nothing is ever wasted and even low moods teach us and those who are close to us, about what is important and what has to be accepted and even loved in every human life. We can never see what's coming next with this strange illness, but everything that has already happened has already come to pass and so will the next hurdle become the past at some point. I hope you know how wonderful your messages are as you so cleverly put into words what I often feel. It's a lovely gift to all of us. Thank God for the love of your granddaughter and for being the person you were made to be from before you were born and for all eternity. Take care xx

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Is there any women's support group in nearby area you could join?

Any local SRUK group?

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Perfectly agree with LucyJean ; a hairdresser's mirror makes a mess of anyone's face.Don't let that get you down.Let's just take life as it is with the serenity you are showing and patiently face one hurdle at a time.Keep well.

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I know just what you mean about confronting mirrors. I hate the trying on clothes in a dress shop mirror. I see the dress, love it, and imagine how it would look on me. Then comes the shock - the picture in my mind does NOT match the one in the mirror. As you say "smile and wave, smile and wave" so I'm smiling and waving. Hope everyone who pops in here is coping with their symptoms. I've been offered the Iloprost infusions thing - is it very awful? I've had a few sessions of iron infusions where you stay in hospital for the day - my body is isn't absorbing iron so pills and medicine didn't work and I had to have it intravenously.

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Hello Betsie, if you are offered Iloprost accept it, the episodes of Raynauds are not so severe, and do not last as long, I know it is not a cure, but it does help. xxx

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Sending a big smile & a wave to you fairy, take care!

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Hi fairy56, sorry you are feeling low at the moment, things can and will get better. Less hair means less shampoo!. My face seems to be turning into a monkey in the mornings, luckily nobody has actually said it yet. It seems to swell up and then screw up when I am asleep. A almost dread waking up but after about a couple of hours the swelling in my face and fingers seems to slowly go. I try not to look but just get up and start doing whatever the day requires, washing, cleaning etc. By lunch time I am tired but happy because I have done something, anything. keep in touch. xx

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Are you able to get to our planned Birmingham meeting. It would be lovely to meet you.

In the meantime, when depressing thought crops up, switch it to a lovely one x

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Hi Jen, thanks for your reply, unfortunately Birmingham is difficult for me to get to. Take care, sending you hugs xx

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