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Still here

Hi everyone

Sorry not been around much lately but been having more bad days than good.

The fatigue is really getting to me and at least a couple of times a week I am off back to bed for an hour which ends up 2 to 3 hours lol.

Still managing to get out on my wheels at least once a week so getting some fresh air.

I have even tried going a walk with hubby and dogs, hubby with one dog and me on my wheels with my boy Harley. Well it was an experience that's all I will say lol :)

Been out with my daughter a few times and used my blue badge, it is so much easier having a wider parking space for me to get in and out of the car. I have also had a disabled parking bay done in front of my home at the cost of £100 to the council but again makes life a little easier.

Anyway in June I am off for a couple of days away just with hubby to attend a wedding. We are making the most of it by staying at the hotel of the wedding so I can pace myself and eat regularly cos of meds and diabetes. We have decided to take the wheelchair just in case there is a lot of standing and waiting around but also cos I never know what the day is going to bring from one day to another.

I have even purchased a lovely floral walking stick to blend in with my outfit :)

I am still on 15mg pred, 20mg MTX and 400mg hydroxychloroquine and all the other countless meds to go with.

Hope you are all ok and pain free

Keep smiling :)


8 Replies

hope feel better soon ,i am having a few bad days have got a virus cough and very chesty no infection ,wondered if i should up my Presolone ,Dr said no ,but feel so tried even stayed in bed yesterday,i am lucky first illness i have had for long time except PMR and GCR ,Mind thats enough as we all know .Take care


personally I would increase the pred til you feel on top of it again but that is up to you. I hope you get over the virus soon. TC Sue x


Hi sue ,sorry you have been having a bad time of it and I know through my own experience that the Fatigue is so hard to cope with and must be so hard for you with your diabetes and your other conditions. So pleased you have managed to get out on your scooter,it gives you so much independence and I have been out on mine yesterday and today, we definetly need more sun to boost our VitD . i am pleased that the blue badge is making going out in the car easier for you, I was so sad when mine arrived but it just makes it easier to get in and out of the car especially when we take the scooter with us. It's nice you are going away for a lovely wedding and suggesting you take your wheelchair is a brilliant idea - I have done this twice and at both weddings there was a lot of hanging around so being able to get back to my room to have a short rest and a cuppa helped me get through and enjoy the wedding .. I of them was on New Years eve last year2012 and my health was slightly better than now,we got to the venue by 12 midday and the wedding was at 1 oclock lunchtime and I was still up and about at 2am ,so pace yourself hope you feel better soon trish. 29


Hi Trish, It's a shame we don't live closer then we could go scootering off shopping together lol.

A new years eve wedding how wonderful, don't think I could have stayed up til 2am though. I am really looking forward to this one it is my eldest son's best friend and he is best man. The venue looks amazing Stoke Rochford Hall Grantham. My shoes have arrived this morning, I already had my outfit as I am wearing one I had 2 yrs ago for another of my sons wedding. I am just getting new accessories. Especially a hat so my bad hair can't be seen much.

TC Sue x


Hi Sue,

Recently I've been wondering how you are and its good to have news of you and to know that you are coping in your upbeat 'Sue style'. Great to have a wedding to look forward to. My offspring and their friends are all around 50, so its second marriages and grandchildren's weddings I am hoping to attend - eldest is 19 - but the young seem to marry so much later these days. I will have to cope and do my best to be all I can be (still sticking to Pats strictures of no sugar...a miracle) and hope to return to health with any luck to attend their weddings.

Read in the paper that fascinators are out and proper hats are the coming fashion. I've always liked the hat in your picture, whats wrong with that one? I expect you'll want one to match your new outfit, so enjoy shopping for it. All the best, Janimaths.


they grey hat in pic won't match my outfit lol. I have got a red one and awaiting a cream one to come so will decide which matches better or feels better on. I am waiting for a new bag also which is brand new Morgan bag I got for £3.71 off ebay bargain. I had a fascinator in red to go with this outfit for my sons wedding but my hair was like in the pic with the grey hat.

I am thinking of getting some highlights but not sure if my hair will take it with all the meds I am on so gotta check that out.

Thank you so much for thinking of me, it is nice to know.

Keep smiling :)

Sue x


Hi Sue, enjoy the fresh air as on looking out of the window I don't think we will be getting much sun anytime soon....then again I am here in rainy Wales. Hope you will feel a little better soon. God bless, Angie x ??


Thank you x


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