Extra Pred to the rescue

[Valnvaughan]

A nasty chesty cough has gripped me for 6 days. But I was not going to miss a long booked trip up to London. Drove up Friday afternoon with a visit to a Christmas dressed National Trust property en route. Hotel was luxury at 45% off, a bargain. Reception said our morning outlook would reveal Harry and Megan’s garden! And it did. The Friday Eve Indian meal was scrummy. The sleep was warm and cosy, and fine even with the “normal for me” couple of walkabouts to keep me flexible. Breakfast was an extensive experience with everything you could think of. I used my mobility scooter to scoot along to the V&A museum for a couple of hours, prior to our Italian wine and cheese tasting. Now it was freezing cold and raining and the accessibility at this small hotel kept me waiting 20 minutes for a ramp to be erected! Not good. Wines were fine and presenter entertaining. Still pelting down as we returned to overnight hotel for our car. BANG My scooter overturned and threw me to the wet road on my 8 week old replacement hip. So embarrassing!!Suffering shock and fear for my hip the tears flowed. 4 hunks rushed to help...supervised by a very concerned husband after I checked I could move my leg ( phew! Not dislocated!) .....lifted me up. The hotel were concerned wanted to get medical help etc etc...I was OK just bruised and shocked. We were given soothing tea in the warm.

We continued with our plans, joining our daughter at her friends gathering and on to another hotel. Extra paracetamol on top of cough meds made me sleepy the next day spent in daughters flat. ( she slept off a hangover, having collapsed in bed at 5.30 am....in her clothes.....and still comatose when we arrived at midday! Oh the life of young things) we were able to iplay Strictly. Then drive to Sunday nights hotel in Swindon to attend an uncles funeral in Exeter on Monday. But overnight......bad coughing, extreme stiffness and pain all over! At 6am I decided the stress of the coughing and fall had probably aggravated my docile PMR....I am on 2 to 1.5 mg Pred DSNS reduction. I took my 2 mg and an extra 5 mg Pred....with a toffee as no yogurt to hand! Dozed and by 8 am was pain free, though still coughing and bruised. Able to attend funeral to pay respects and greet rarely seen relatives. Drive home 4 hours and relax. Still feeling OK and fingers crossed the flare is controlled.

Thanks for listening. Valerie

[Blearyeyed]

You are amazing!

And a real testimony to all people who are just starting on the long Pred fuelled road towards recovery from PMR/ GCA that there IS light at the end of this very dark tunnel.

Imagine , years back , when the dose was high , just the cough or journey alone ( especially so close to a hip op.) would have caused you untold agony and flare ups for weeks.

But now , you are showing us all , how it's done , that the doseage does shrink , activities can come thick and fast , and you can have one of those dreaded tumbles but still be able to cope with things like anybody else without PMR.

I am going to follow your post , because in the dark times I am going to read it because it has given me so much hope about what's to come.

Merry Christmas to you and yours . I hope that your New Year brings continues to see you go from strength to strength , and thank you so much for writing this post.

I am sure I will be reading it again and again to help me carry on and get to the place you are in today. xxxxxx

[Daisychain12 in reply to Blearyeyed]

QB. What a great post. Isn’t Valerie amazing. Xxxxx. I feel like a little cry baby after reading that lol xxx👶🏻

[Blearyeyed in reply to Daisychain12]

She is , but you are no wimp , you have just started the journey , that's why reading about Valerie even though she had a nasty fall is so inspiring .

There's light at the end for the tunnel DC , and Valerie has helped us see it. xx

[Daisychain12]

Oh my gosh. I am in shock. I feel like the biggest wimp ever. You are magnificent. You FELL OUT several weeks post op. Yet didn’t go to hospital?? You ploughed on???? You did all that??? I am in shock. You are so brave. So sorry you got sick. It was probably the shock. Are you getting better?????????

[Elaine-W]

Valerie I can hardly believe what I have just read. We are in the presence of greatness. A PMR Rock and Roll star. I was exhausted half way through your post before we got to the roll. When you were rocking in and out of different hotels and going out for meals. All that travel and the preparation it takes. If you can do all that then us mere mortals can get thru a quiet Christmas and throw a few decorations towards a tree in the hope they land with some resemblance of Christmases past. My Yuletide wish for you is good health and happiness for you and yours. May your adventures be just as exciting as the musical kind of Rock and Roll. Please continue to entertain us with your posts xx🌲💐🌲💐🌲💐

[Sandradsn]

Wow what an adventure! Glad you're Ok, time to have a rest?

[Jean56]

You are truly amazing. Like Daisychain I feel an absolutely wimp. I’m stressing about the family arriving Thursday for two nights, two adults plus a 10 & 8 year old. Christmas just one extra mouth to feed for four nights stay. We also have to attend a funeral in early January 200 miles away. You did all that, including having a cough, an accident, numerous venues and a new hip. Yep, I also take my hat off too you. Enjoy Christmas......relax, you deserve it.

[Blearyeyed in reply to Jean56]

Not a wimp , just further to go on the journey , I bet Valerie got to where she is today by taking alot of rest and scaling back on the festivities in earlier days.

and remembering PMR/ GCA doesn't take a holiday at Christmas so we should instead!

Take care and try not to get too stressed xx

[Jean56 in reply to Blearyeyed]

Bless you. I’m 3 years into PMR. I can’t get below 10. I know in the scheme of things it’s not a high dose and it’s only 3 years, seems like a lifetime. It’s difficult to pace myself, my husband requires a certain amount of care. I was doing well, taking life in the slow lane but the run up to Christmas has taken its toll. The funeral we have to go to in January has knocked us both for a six. A very dear friend of over 40 years died suddenly no warning, brain haemorrhage. Haven’t slept well since we heard and the thought of the journey in the New Year in possible bad weather worries me. I know I’ll be better at coping if I could catch up on sleep. It’s the gremlins that infest your brain at 3am! I hope you have a happy and relaxing Christmas.

[Blearyeyed in reply to Jean56]

I know being hit by bad news , especially news like that can take a serious toll.

There a so many things we wind up ourselves and our symptoms with , especially at this time of year , that we think we have to do , or need to do .

In reality the only thing we need to do is rest and look after ourselves because we have to get better.

I went to a funeral last year , I really wanted to show my respects but it was a huge journey in February .

It seemed mad to me at first ( it was a funeral not a party) , but I even did what I do for any invitations I get these days that I really want to attend but am not sure if I will physically be upto on the day .

I sent them a posted message , telling them I was so sorry for the loss of a dear friend and I hope and want to attend and would do if I could , but if I could not be with them on the day because of my health I wanted them to know they would be in my thoughts and prayers and I loved them very much.

As , it turned out , just like many things that I get to these days , I felt well enough to go. Probably because by taking the pressure off myself to go , and the stress of thinking about having to go , I am more relaxed in the time before something comes up , so feel well enough to go on the day.

It won't work for everyone , but it's working for me.

I hope you have a lovely Christmas despite your loss and remember to rest , and give up the jobs that you don't have to do. xx

Take care. bee x

[Jean56 in reply to Blearyeyed]

Thank you. Very good advice. I’ve just collapsed on the sofa, I love my sofa, spent hours on it over the last three years. What gets done, gets done the rest can wait. I know our friend would be the first person to say, if your unwell or the weather is bad stay at home. Would be good to be able to get there but common sense must prevail.

Who was it that said women suffer from a surfeit of oughteries, we ought to do this, we ought to do that. Sometimes we are our own worst enemy.

[Valnvaughan in reply to Blearyeyed]

You are right in the early days of PMR I had to give up some activities such as ballroom dancing, and volunteering at Citizen Advice, and curtail others such as driving my sports car and rambling, and my social life slimmed down. I had a real set back at 9 months, when my husband had a heart attack. We found neither of us could do the garden and housework and had to employ people. The cleaner continues and is now a friend and support. Gradually as Pred reduced I gained some mobility despite several “flares” as diagnosed by my GP. And I seemed to collect side effects tinnitus, pre diabetes, weight gain, eye problems, nasal trouble, liver problems, UTIs etc but escaped GCA. Last December I asked for extra tests as my pain was no longer bilateral and severe osteoarthritis in both my hips was discovered. I was lucky to get a rapid NHS referral to a private hospital and had a first replacement in May. By the time No1 was ready to walk, No2 was unable to move and I remained on crutches or in a wheelchair till my 2nd op in October. Recovery has been slow as ordered by surgeon for 2 ops so close needs special care, which I gave till 2 weeks ago when I was given the green light to swim, drive and exercise. My weekend fall scared me but an extra 5 mg Pred on top of my 2mg per day on Monday, and 5mg in total today I seem OK.

Can I be more careful.....? Maybe.

Nice restful time till family arrive on Sunday.....better “ we travel to you after 2 ops”. Daughter + husband+ 8 & 4 yr old granddaughter+ daughter no2.

I was touched by all the comments, thanks.

Santa please stop here. Valerie

[Blearyeyed in reply to Valnvaughan]

Thank you for adding in the extra details on your whole Pred/ PMR journey for us all , members old and new.

It proves that we in our early days are not wimps for resting , and that there are falls and peaks along the way.

It shows us all that it's a journey of adjustments but if you make them , have patience and don't try to run before you can wobble , success like yours can be achieved.

I look forward to the day I can tumble from a scooter and come up smiling ( and not just because of the helpful hunks!) Giggle😂😂😂😋

Thank you so much again , you are an inspiration and I am positive Santa will stop for you!

Merry Xmas and onward and upward next year . xxx

[karools16]

Wow, Woman, you sure had an action-packed few days. Well done! Then a fall to top it all.Hope you have a darn good rest now.

[bunnymom]

I was cheering you right along and then smack.... The scooter accident! Wow..that you just kept it all together is very inspiring. Shows us all we can sometimes just live our lives and adjust. Well done!