PMR/GCA Unicorns! Share your goals for your recovery or give advice for people's goals and let's help members PMR wishes come true.

[Blearyeyed]

Do you believe in Unicorns?

Well this photo taken on a walk this week proves anything is possible , even a good PMR/ GCA day!

Unicorns are all about wishes , and I am sure every member on the forum ( be they sufferers or carers) have wishes and goals for PMR/GCA recovery this Spring.

And I am sure many, many members also have some words of advice to help peoples recovery wishes come true.

So I hope , on this , the first day of meteorological Spring in the UK , people will make their wishes in the replies below and others who can help with them will share their advice so March can bring a big Spring boost to all of our PMR/ GCA journeys.

Call it a PMR/GCA Recovery Brain Storming Session if you will , all inspired by a picture of a Unicorn Wish Wellington!

I hope you will be inspired to join in both PMR/GCA wishers and wish helpers and let's all make a big step forward together this Spring.

Looking forward to hearing your wishes , Happy St. David's Day , hugs , Bleary-eyed aka Bee xxx

[Blearyeyed]

Forgot to add my wish!

To have my other disease diagnosed when I go to clinic so that they can get my GCA drugs and doses right without having to hold the Specialists to ransom!

What are yours?

[scats]

Last year's goal was to walk to the sea. It's across country and three fields away. Walking on rough ground is very hard work for me as PMR effects my legs the most. I only managed 1 1/2 fields, so that is still ongoing. When I reach the sea I will post a photo and gloat!

I'm going to be greedy and have a new one for this year because my son has split from his partner and I would love to be able to visit him and the children. I can't drive that far yet ( legs again) and couldn't manage there and back in one day on public transport, as things stand. I'm bribing my other son to take me, fingers crossed.

Hope you get your meds sorted soon!

[Blearyeyed in reply to scats]

If you need any help bribing your son to help you achieve your wish let us know and I can't wait to see a photo of you achieving you goal to reach the Sea on foot.

Would love to do it with you , perhaps we should make a plan. Hugs , Bee xx

[Yellowbluebell]

Can I have two wishes? Oh sod it I am taking two anyway! My first was to stop being a very solitary person and make new friends, not colleagues who I see socially or neighbours who ù but real friends. This wish has already happened thanks to HU. This is why I asked for 2 wishes!! I do have a tendency to be greedy!! The 2nd wish was just going to be something trivial for me as I realise I actually have everything I could wish for (obviously didnt ask for pmr) then I realised what I want most is that 2 very special friends I have made on this forum get their wishes come true. Never wished on a unicorn welly before but you just never know!!xxx

[Blearyeyed in reply to Yellowbluebell]

That's so nice and kind , if you can I get you will help , and I am so glad you have got one wish already thats for keeps !! Hugs , Bee x

[Yellowbluebell in reply to Blearyeyed]

I just realised I dont have an awful lot wrong with my life except the pmr and even with that I am a lot better off than most on the site so as I got my first wish it only seemed fair I try and make others wishes come true. Lovexx

[Hidden]

"Dydd Gŵyl Dewi Hapus." 🏴󠁧󠁢󠁷󠁬󠁳󠁿🌼🏴󠁧󠁢󠁷󠁬󠁳󠁿

[Yellowbluebell in reply to Hidden]

What does it mean in English please xx

[PMRpro Ambassador in reply to Yellowbluebell]

Happy St David's day ...

[Hidden in reply to Yellowbluebell]

Happy St David’s Day 🏴󠁧󠁢󠁷󠁬󠁳󠁿🌼🏴󠁧󠁢󠁷󠁬󠁳󠁿

[Yellowbluebell in reply to Hidden]

Thanksxx

[Liskeard]

What a lovely idea!

My wish, of course, would be for a ‘cure’, to not have this b*****d of a disease and that we didn’t all have to live life just coping. Is that three? All the same really though.

Saying that, if I hadn’t got PMR and hadn’t found this forum I’d be less appreciative of what I have. Hope Spring is good to us all.

[Blearyeyed in reply to Liskeard]

I bet lots of us have the same idea and many wish to have the same level of positivity as you do. Hugs ,,Bee xx

[Yellowbluebell in reply to Liskeard]

I was greedy and made two so even if yours does count as three they were for everyone else as wellxx

[Marijo1951]

I'm down to 9 mg of pred (as of yesterday). My wish is to reduce gradually to a manageable, effective very low dose without setbacks and flare ups. I'd also like my recalcitrant youngest daughter to get in touch with me (and be nice for God's sake!) and for my brain fog to clear enough for me to resume my French studies successfully.

[Marijo1951 in reply to Marijo1951]

Sorry, I'm greedy! I also want to lose at least another 2 stone in weight.

[Blearyeyed in reply to Marijo1951]

Tres Bien , Marijo it will happen , may take a bit longer than March though xx

[Marijo1951 in reply to Blearyeyed]

I know. It's definitely two steps forward and one step back at Slimming World, even though I'm sticking rigorously to the plan... So this is a longer term wish, maybe achievable by spring 2020.

[Yellowbluebell in reply to Marijo1951]

I started WW online with OH as he needs to lose some weight as well only for him to lose 4lb in a week and I put on 3lb. Plus I am sick of bloody carrots

[Marijo1951 in reply to Yellowbluebell]

I find SW a bit more user-friendly than WW. I joined the local group and paid for 12 meetings in advance so I wouldn't slacken. So far I've lost weight 5 times (between 3.5 and 1.5 pounds) but twice I've gained a pound. When I saw the rheumy on Wednesday she confirmed that weight loss is slower when on steroids, partly because carbs are metabolised differently and partly because of fluid retention. This encouraged me to continue. My perception is that I must have lost a bit more than the scales show because some of my clothes are a lot looser

[Yellowbluebell in reply to Marijo1951]

I am still finding clothes really tight so unfortunately the scales are telling the truth at this timexx

[Yellowbluebell in reply to Marijo1951]

This includes the very expensive mother of the bride dress which I dared to try on yesterday. I have 7 weeks till the wedding so unless I lose 2lb a week I will have to find a new outfit

[scats in reply to Yellowbluebell]

Better cut out the cake then!

[Blearyeyed in reply to scats]

I believe it was carrot cake though so maybe that's allowed on the diet!

[Yellowbluebell in reply to scats]

Well by the time a week on Monday gets here I should have lost some weight so a piece of cake at the fabric shop will be a reward!!

[PMRpro Ambassador in reply to Yellowbluebell]

I don't THINK that is the idea ...

[Maisie1958 in reply to Yellowbluebell]

My daughter has just got engaged and her fiancé family are tiny so I need to reduce weight-ooh the photos! However her and the man have been together 12+ years and haven’t set a date-maybe next year? No panic yet! 🍰🍷xx

[Yellowbluebell in reply to Maisie1958]

My daughter has been with her fiancee for 8 years and we were told it would be 2020 which was great as eldest only got married in nov 2017 so we thought we had a little while to recover!!! Then she announced they had changed their mind and the wedding would be in a year!. I normally take a.siz 10/11 so last September I bought my dress. October I was diagnosed with pmr and now.7 weeks to go and I probably need a 14 if I am lucky!! Hope fully they will give you a bit of time to lose a little bit of weight fingers crossed

[Maisie1958 in reply to Yellowbluebell]

I’m worried now 🍫🐷x

[Yellowbluebell in reply to Maisie1958]

Sorry didnt mean to scare you. The couple will need a fair few months to organise a wedding. Both of our weddings will have taken 13 months to organise so you have a year to lose some weight. Dont worryxx

[Blearyeyed in reply to Maisie1958]

Don't worry , you have will have plenty of time to lose some weight , but I bet the most important wishes of both your daughters on the big day will be that their Mums feel well enough to enjoy it!

They won't care what you look like as long as you're healthy and have the energy to make some lovely memories with them.

Good luck to both your brides , bee xx

[Blearyeyed in reply to Marijo1951]

That's definitely true , plus even healthy people reach plateaus and have weeks between weight loss or the odd gain as your body readjusts in hormones and enzymes as your weight changes.

One pound on , isn't always food and is very normal so people shouldn't worry , it's only consistent rises of a few pounds that usually mean you have to reduce your portions again to reflect your new lower weight or increase your activity. But you sound like you are really doing well. xx

[PMRpro Ambassador in reply to Yellowbluebell]

Carbs and carrots???????

[Yellowbluebell in reply to PMRpro]

I am eating the carrots as a free food at night when I normally would eat carbs and sugar. I love nuts but apparently not on WW as they are too high in points. Any suggestions for free point food gratefully received.xx

[PMRpro Ambassador in reply to Yellowbluebell]

Oh OK. SW is a nearly closed book to me but I do know a bit from daughter No 2 who uses it. I find it very complicated - but maybe that is me!!

[Yellowbluebell in reply to PMRpro]

I am following weight watchers but eldest used SW and she found it ok.

[Blearyeyed in reply to Yellowbluebell]

Aren't strawberry laces and pink and white marshmallow wafers allowed on WW or is that just a tale I was told by my WW friends?

[Blearyeyed in reply to Yellowbluebell]

I just read that these are zero point snacks , sugar free jelly pots, 0% fat free yoghurt, handful of strawberries with or without balsamic drizzle , chicken slice with a handful of grapes , homemade tomato salsa with all crudités veggies or a hard boiled egg with spinach leaves.

Not too bad , if whisk the yoghurt like more of a whip to put with your jelly , or freeze it then put it in a mini processor or bullet with the chopped strawberries , you could create 0 point strawberry ice-cream! , it may not feel like dieting at all!

Plus if you are willing to sacrifice 2 points you can have a Jaffa cake!!

[Yellowbluebell in reply to Blearyeyed]

At weight watchers all chicken, fish, eggs and Turkey are free as are nearly all fruit and veg so not stuck for main meals or side but struggling to find an alternative to the sweet side instead of sweets and cake etc. I can definitely do the strawberries and yoghurt frozen or fresh though. I know there is a muffin I can make that's only 1 point just desperate to find an alternative so I can still nibble sweet things. I thought I could eat nuts but apparently not as they use too many points to even eat half a dozen!!xx

[Blearyeyed in reply to Yellowbluebell]

I will OM you saw more ideas , and if any body wants some recipes for low sugar , low carb or possible zero snacks just feel free to contact me in chat and I will send you suggestions too.

You can freeze the chopped strawberries instead and then add them with the yoghurt to a mini processor and it will make soft scoop ice cream that way too. xx

[PMRpro Ambassador in reply to Blearyeyed]

Actually - why not start a recipe thread? If others want to spoil it that is their problem.

[PMRpro Ambassador in reply to Marijo1951]

I think part of the difficulty some people meet with SW is that it tends to be quite carb-heavy in some respects and for some pred and carbs simply fight...

[Marijo1951 in reply to PMRpro]

No, I'm also keeping to low carbs, in fact no sugar or white carbs at all (apart from a very occasional potato). It fits in with SW which is quite versatile.

[Estellemac in reply to Marijo1951]

I’m in the same boat. I can’t sit about hungry. I need to be moving around not to focus on food.

[Estellemac in reply to Estellemac]

I’m a bread butter and sugar addict. Banana on dry brown toast is my treat of choice. Lesser of the many evils I need to avoid.

[Yellowbluebell in reply to Estellemac]

Its the bread thats an issue isn't it? Bananas are free but even brown bread I have to use points

[Yellowbluebell in reply to Marijo1951]

It seems like we all want more than one wish. If there were two unicorn wellies could we have more wishes I wonder.xx

[Louisepenygraig]

My wishes would be to be able to go for long walks in the mountains or be able to do a full days work in the garden again. Since that's totally unrealistic I'd be satisfied with shorter, 3-4 mile, walks and enough gardening to keep me satisfied. I'd also like to get back on track on losing weight so that I lose the half stone necessary to be in the 'healthy' category rather than 'overweight'. I'd like my bone density to improve too.

[scats in reply to Louisepenygraig]

Greedy!

[Blearyeyed in reply to scats]

Why not , it's all the same wish really ! xxx

[scats in reply to Blearyeyed]

Actually most of us want more than one. we all want to get better and...

[Louisepenygraig in reply to scats]

It's probably a wish for my body to be 30 years younger!

[scats in reply to Louisepenygraig]

I'll joinn you there!

[Slowdown in reply to Louisepenygraig]

haha, but with the accumulated years of wisdom and experience we have all acquired, of course The Unstoppables.👗😇😳

[Blearyeyed in reply to Louisepenygraig]

I think you can work your way with that one Louise.

You might not be a able to do the mountains yet but starting with even potting up bulbs and seeds for Summer sitting at a table in the garden , then the odd bit of light work and as your do it your strength will build to start the walks off. It is suprising how many miles you do even when you do light gardening!

Bodnant Gardens for coffee I think!

[Louisepenygraig in reply to Blearyeyed]

Yes, I'm working on the gardening and have a small, and I hope manageable, bit outside our cabin. On the whole I've accepted that there are parts of the mountains that I'll never see. The fact that my husband has always been so much stronger and more energetic doesn't help with this though. He just went up Snowdon for the second or 3rd time since he had his second new hip 18 months ago. He's working on doing all the routes and, I think, has just one more to go. My younger daughter has just got into walking in a big way and will set off into the mountains from home and come back 7 or more miles later. She even walked over to just outside Bangor (11 miles) before Christmas. On balance though his excess energy makes up for my lack though so it's good.

[Blearyeyed in reply to Louisepenygraig]

That's one the troubles when you have PMR , you want a bit of exercise in a nice place , but you can't keep up with rest , so you don't want to spoil things for others and just don't go. In my family , until this hit , I was the big action junkie and I miss those mountains too.

But , you are quite close , and I am hoping when my drugs are sorted , to start working out places to drive to where I can do little walks but still take advantage of the mountains. If you want me to keep in touch with you by PM for when I do it I would love to take you along , you , me and my OH ( who absolutely hated any form of exercise and probably sees my inactivity as an added bonus of PMR!) then maybe we can both have one of our PMR wishes come true. Let me know , Bee xx

[SheffieldJane]

I Beelieve 🌸in miracles but cannot hold too much advice in my head at once. One step at a time, that’s me!

[Maisie1958]

Hi Blearyeyed -timely post because I actually got my wish this morning....went to my first spin class in four years...and survived. Sweaty mess but feeling happy. Might not be able to move later so may have use a wish to get going again.

Diagnosed PMR May 2015. Started on 40mg -been hovering around 3/2/1/0mgs of prednisolone for a couple of years now.

Wishing us all health and happiness x

[Blearyeyed in reply to Maisie1958]

That's showing us how it's done , getting your wish on the first day of the month then you can relax for the rest of the month.

Well done , but make sure you take plenty of rest for the next few days and don't forget to have the odd rests and lots of fluids at classes and hopefully that after burn won't be too bad.

Be proud ! Hugs , Bee x

[Maisie1958 in reply to Blearyeyed]

I have had an easier time than many of us here but I never thought a year or six months ago I would get back to spin😊It was slow, sweaty and not pretty but I’m still smiling now. It does get better x

[Maisie1958 in reply to Maisie1958]

Ha -I did mean the spin class but the slow, sweaty and not pretty describes me with PMR too! X

[Blearyeyed in reply to Maisie1958]

It is an amazing achievement , just take care with it and you will be one of those people on here like Val and PMRPro and Marijo that inspire us all to see that their will be light at the end of the PMR tunnel and like finding unicorns , anything is possible , hugs , Bee xx

[Yellowbluebell in reply to Maisie1958]

Even if you cant move tomorrow it will be for a good reason and not the pmr. well donexx

[Maisie1958 in reply to Yellowbluebell]

Thank you 🙏. April 2015 I was trying to sleep in a chair or sofa as I really couldn’t turn over in bed. It’s a slow old road for us all on this PMR/GCA journey but it does get less bumpy eventually....x

[Yellowbluebell in reply to Maisie1958]

Its nice to see the successes and not just the problems we have on the pmr journey.xx

[Estellemac in reply to Maisie1958]

You give me hope and a light at the end of the tunnel. 🙏

[Cyclegirl54 in reply to Maisie1958]

Well done you👍for doing that class!

[Maisie1958 in reply to Cyclegirl54]

👍💪 x

To be fair very little resistance and slow but it felt brilliant, I’m still happy 😃

[Estellemac]

I believe in Unicorns. Just cos I have never seen one doesn’t mean they don’t exist. I believe there are a lot more things in this universe we will never see or understand too.

My wish is to manage this annoying condition practically and stop waiting for a miracle. I am more fortunate than a lot of people on here or world wide and I hold that thought even on really bad day. It’s not forever is my mantra.

[Blearyeyed in reply to Estellemac]

Great you have combined a wish with some really good positive advice , thanks Estelle!

It's Not Forever , great Mantra to remind us all.

For some getting to the point that you are and having your sort of acceptance feels like a miracle when it happens.

Hope your wish to get PMR under ' New Management' happens , and any practical tips you need even on small things ( they are often the most life changing) keep posting I'm sure we would love to help with practical tips when you need them.

Keep believing , hugs , Bee xx

[Estellemac in reply to Blearyeyed]

You already help by just being here listening and giving positive feedback 😍

[Blearyeyed in reply to Estellemac]

Oh Thank you , that's one of my wishes , to be able to do something that can still help others despite the limitations of GCA/ PMR, so it's nice to hear I am managing that goal too. Take care and have a wonderful weekend , hugs , Bee xx

[Yellowbluebell in reply to Blearyeyed]

You dont realise how much help you give to the people on the site.xx

[Blearyeyed]

I have just looked at the wishes posted so far and I have been so touched by the amount of people who have wished for us all to feel better soon.

It is so amazing and positive to read , and I am also struck by how many of us have gained a positive boost when trying to think of what to wish for and getting to realise how much they appreciate their lives in general beyond PMR and feel they have so much to be happy about .

Such good feeling , perhaps we should do this more often , it's definitely made me feel better reading it.

Thank you everyone , Bee xx

[Cally55]

My wish is for there not to be a banana skin round every corner! I have now started to put on weight dramatically, in spite of reducing to 9.5mg. I think it may be the biscuit I have with the painkillers for my back, otherwise I get horrible stomach pain. Reduce painkillers, back hurts more, sit around more, still put on weight. Apples dont help with the indigestion maybe half a banana and a smaller lunch?

[PMRpro Ambassador in reply to Cally55]

Have you tried lower carbs?

[Cally55 in reply to PMRpro]

Yes, that's why I think it must be the biscuits,only 2 per day! Skipped the codeine ( and biscuit) last night and now my back hurts!

I also take paracetamol, can't tolerate NSAIDs,now advised against TENS machine because of AF, hoping for appointment at pain clinic.

[Blearyeyed in reply to Cally55]

Definitely ask for them to refer you to the pain clinic and ask for them to state it's urgency on the request , or if you have already been referred chase it up and ask them to chase it up at your GP appointment.

[Blearyeyed in reply to Cally55]

It can take a long time to lose weight on steroids and the inactivity we are forced into doesn't help because as you know you need to combine increased activity with less calories to actively lose weight.

But , if you are on a reduced diet and having other symptoms it is always worth while discussing this with the GP too , as it may be advisable to have a thyroid , gastric, liver/ cholesterol check to be sure that there aren't any other hormone balances causing your symptoms.

I wish you luck dodging your banana skins , hugs , Bee x

[Cally55 in reply to Blearyeyed]

That's a thought, maybe I'm notj just greedy. Next banana skin will be getting a GP appointment!

[Blearyeyed in reply to Cally55]

I wish you all the luck in the world with that ! I hope your surgery is alot more user friendly than mine. Hugs , Bee x