What a beautiful day!: Hi everyone... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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What a beautiful day!


Hi everyone!

Just a quickie! It's a glorious spring day today in Bristol. I had a lovely comment from my hairdresser this morning. He remarked on how my fingers are uncurling and look so much better :) it's nice to know that I'm not seeing things!

I've been into town for the first time in ages. For an opticians appointment, but I did manage some goodies from Lush too!

I forgot to mention on the blog about exercise. I am planning to get a dog, as I've always wanted one and I'm home most of the time. So if anyone knows a Whippet breeder, let me know! I'm planning on training her to be an assistance dog.

One last thing before I shoot off. Does anyone do any voluntary work? I started properly over a year ago for my local equine charity. Really basic data input, absolutely nothing like my old job. But it has made a huge difference to my life. I am back in an office environment, so there's a good old gossip and a laugh. Plus I've found that I want to get dressed smarter too. And last week I was invited to one of the girls weddings, which was the first time I've been out properly in years.

Enjoy the sunshine everyone! :)

12 Replies

Oh Skwiglee!! What an uplifting post!! I've been doing voluntary work at my local hospice for the past 8 years and it really does me so much good. I get an awful lot out of it and it helps me to feel a useful member of the community.

Love from sunny Ramsgate x

Skwiglee in reply to sylvana

It's such a lovely day, isn't it? Voluntary work has made such a difference for me too. I also help in the school holidays, in a meet and greet role. Now I haven't got so much money, a 10th of what I used to be on! I look at it from the viewpoint, that my work saves them paying someone. So it goes to the horses in a roundabout route. As I live on my own, the companionship is great. Plus, the lippy and the eye makeup has surfaced again. I didn't realise that those little pink dots on my face, were caused by Scleroderma - but that's what a fringe and foundation is for! Happy Tuesday Sylvana xx

Hi there !

Even I managed to make it out today - to the opticians ! Ive had to cancel the last few appointments as it was just too cold to go out ! and I did the hair appointment last friday ! I liken the sclroderma and raynauds experience to being a butterfly - as I only go out when the sun shines !

I also do quite a bit of voluntary work: volunteer education presenter for the RNLI; legal adviser to my local disability group who advise the local council, as well as I bake 48 cupcakes each month for the local soup kitchen ! I agree with you both - voluntary work can be immensely rewarding in a way that money can not buy. Unfortunately I am not very reliable to turn up to meetings and appointments due to the diagnosis, so I try and do whatever I can, and of course the inernet is a lifeline !

I was also able to downgrade on my gloves today - the Ugg ones stayed at home, and I was ok with my thinsulate fleece ones which are not as warm as the sheepskin Ugg ones ! I still had thick socks and ugg boots on as well as 4 layers so not as eskimoed up as usual - happy days ! living the dream :) x

Skwiglee - if i grew my fringe to cover my red spots I would be looking like a yeti ! ;) x

It must have been hairdresser and opticians day! I actually wore NO mitts today! Yaaaaay! I can't wear gloves, because my fingers are still too curled - but getting much better. I still have to put my boots on using a grabber as I still can't bend far enough. So I wear toggle boots, that way I can hook the elastic loop to pull them on. I'm very fair skinned so my dots are pink. I just thought they were marks from where I'd fallen, until you mentioned it. But, I reckon a good foundation will cover them if I need to. Plus most are on my forehead. Do you have a perma tan too? I'm brown all over and it saves a fortune on fake tan, lol! I know what you mean about reliability! I reckon Facebook is a godsend and a lifeline. Have you booked that Bowen appointment yet? Right, it's long past my tea time. Xx

Well, wasn't it wonderful to have the sun yesterday? I went to help my son look after my 2 year old grandson and his little twin sister. We all sat in the sun on the lawn and it was so great to feel the heat on my body! I've been aching all over, especially my hands, but that sun and the fun with my grandchildren really helped. I went out to a quizz night with a friend last night, something I haven't done for a long while, and that did me good. I haven't been able to volunteer for anything for a while as I have a tumour between my toes on both feet, and a huge bunion. The knuckle cartilage has worn out, so it's really sore to stand on for any length of time. But after I've had the operation to correct that, I will be looking for volunteer work again. Have a happy day everyone!

Skwiglee in reply to nettie545

That sounds painful. I hope that you get that sorted out soon. Xx

It's Sainsbugs delivery day today. So I'm well happy! Loads of yummy stuff, that I didn't have to lug up the stairs. :)

When I was in town yesterday, I got one of the new L'Oreal lippys that are being advertised. I got home and tugged and tugged, but it wouldn't come apart - like all their others do. I resigned myself to the fact that I would have to take it back.

Anyhow, it was so nice of L'Oreal to advertise said lippy on the back of the magazine that just arrived. And it was amazingly easy to unscrew! Hangs head in shame! Have a great day everyone :)

Hello, Yes I am a volunteer with the National Trust as a room guide. This has a few advantages - most houses are closed during the winter, I get free access to all NT properties, they will pay travel expenses if needed, they organize coach trips to other NT properties and I have met some lovely people - other volunteers and visitors to the house. I think you will find that a lot people do a lot of voluntary work long before Dave Cam had his "big society" idea! Glad the sun is shining on you.

Skwiglee in reply to Yorky

That sounds like a lot of fun and very interesting. I think it's nice to put some structure back in my life. But without the stress of a salaried position.

Yorky that sounds great, but what is a NT property? Excuse the ignorance!! :)

Skwiglee in reply to nettie545

National Trust xx

Oh! Thanks. :)

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