A PAIN IN THE WOTSIT !

 

OK so you have RA/RD or some other autoimmune disease and there’s no point in looking back.  You are here, at this point in time, and you have PAIN of one sort or another.  They come together like strawberries and cream, or rather more like slugs and snails moving from one point of your body to another.  Just as you think you are pain free, you try to get out of bed and back it all comes.
The trick, or the way to cope with it comes in all shapes and sizes and is different for everyone.  For some it may be drugs, diets or loosing weight, or heat pads or ice packs – it really doesn’t matter as long as it WORKS for you.  I’m going to bore you all and tell you what works for me starting at the top.
BRAIN FOG comes and goes and often I am told that I have totally ignored someone who was calling or waving to me.  But I am fixedly concentrating on getting from a to b and my vision tunnels down to what my brain is fixed on.  Sorry, but there it is !
My EYES have occasional blips.  I had my cataracts done and since then I occasionally see pretty circling prisms rotating around my vision.  What is slightly wrong is that they are still there if I close my eyes, so I told my Rheumatologist and she asked if I had seen an optician ?  No I haven’t and this is mainly because I now just take all strange things as part of my RD !  Maybe I should, but as they are always associated with a slight headache I just go to bed and count backwards !!
Pain in my HANDS drives me scatty !  I can no longer close a fist at all, so drop most things and it hurts, really hurts when I try to pick them up.  So I have a handy reacher in several rooms in the house as I can never remember where I put them!  I have compression gloves which help a lot in winter and wrist supports for when I drive, but the pain in trying to do most household chores leaves me unable to do more than one chore a day – sometimes not even that !  I used to love working in the garden and still can to a certain degree.  No, I can’t mow the grass or bend down far enough to weed, but I now have a long handled weed gripper that you push in over the weed, and rotate. Obviously it’s the ‘push’ and ‘rotate’ that limit me and if I try to work through the pain, then I pay for it the next day !  I find the best thing for sore hands and wrists is Arnica Oil which I massage in and which smells divine !!
My KNEES are a whole other subject !  One is OK and one is not. I had a knee replacement on it and now I can’t bend it and it hurts all the time, bearing in mind that I had it done in 2011 !!  I also had a HIP replacement in 2005 and that was successful though both hips twinge a lot during the day. But bearable !
My rotten hip replacement threw my FEET out of balance and I ended up walking around with a broken foot for 18 months.  Yes I went to the hospital several times and yes, they Xrayed it and said it was broken, but nobody wanted to fix it.  Walking on broken glass would be one way of nicely expressing the pain until I eventually went to a brilliant foot surgeon in Dublin (300 miles from where I live !) and he told me the great news that the other foot was breaking too. So he fixed the first one with titanium implants in 2014 and the other one in 2015.  So I was in a wheelchair and/or walking boots for 3 years !  But the pain endured is OK if you know it is going to be fixed and disappear – not the same thing at all with the rest of your body that can’t be fixed with an operation or drugs, or diets, or whatever.
And then, just for good measure your body throws in the FATIGUE.  Before I started on Humira in 2005 I was so exhausted that I had to go back to bed about an hour after getting up !  My Humira magic juice sorted that out to a great extent, but slowly and relentlessly the fatigue is creeping back ! I tell myself that its because I’m going to be 71 this year and I should be slowing down, but in reality I act like an ancient granny and just go to bed at 7.30pm, put my heat pad on where its hurting and watch TV from the prone position !!  If we have to go out of an evening, then I rest in the afternoon – that way I can make it to about 10pm.
I can’t remember back to when I didn’t have RD and life was normal, but as I said at the beginning of this article, if you have it then you are stuck with it and it’s up to you to make the best of your life in whatever way you can.  Filling your somewhat foggy mind with other thoughts and being determined to enjoy living to the fullest you can is definitely the answer.  Don’t moan about your lot in life, smile and do what you can. If nobody else notices it, then at least you will and also set yourself a tiny goal to achieve each day.  You can succeed against all the odds – well, I’m still here as living proof and I really like that !

 

 

 

THE CURIOUS CASE OF THE HEALING POWER OF EXPRESSIVE WRITING

 

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Whilst lying dozing in my bed at the end of my day listening to the radio (because of the effort of watching television at that time of night ) I was suddenly aware of the mention of Rheumatoid Disease on a BBC programme called “All in The Mind”, so dragged myself into a sitting position to better listen !
What I heard was amazing piece of research done recently with RA patients on the connections between the mind, the brain and the rest of the body which all appear to be linked. It may surprise you to know that Expressive Writing seems to relieve pain and alleviates other symptoms of this chronic condition.  Researchers believe that doing this Expressive Writing mitigates conscious and unconscious stresses that suppress the immune function and cause inflammation.  This was first discovered in the late 1980’s by Dr.James Pennebaker who revealed striking benefits on writing about trauma.
OK, so how do you and I go about this ? Pennebaker’s study has recently been updated by the University of Nottingham who gave two separate groups some pieces of paper and a pencil.  One group with RD and one group with asthma. Each group was then split into 2 halves. One half had to write about a really traumatic happening in their lives for 20 minutes each day over four days.  You just had to pour your heart out on either one particular traumatic event or four separate ones, not bothering to stop for punctuation, spelling or grammar. The other group had to write a diary of their day so far.  Then all of them were given a 4mm punch biopsy on their upper inner arm under anaesthetic and they were left to heal for 10 days.
The results were startling ! The group that did the Expressive Writing did not heal one day faster, not even two — they healed six times faster than the second group !!  The same result applied even if the biopsy was given before the expressive writing.
Further amazing results followed in that it didn’t matter if you wrote with a keyboard or spoke into a recorder and they found that it boosted thinking ability, improved working memory, reduced tension, pain and fatigue, enhanced sleep quality and mood quality and had a positive influence on the immune system function ! The group who just wrote a daily diary had no improvements at all.
Participants were checked at ten days, one month and four months. The asthma patients definitely responded faster than the ones with RD, but the effects on them all were really noticeable at four months .
So it would seem that writing about your darkest memories can have a huge effect on your immune system . It’s said that it’s like releasing a valve on a pressure cooker with all your negative memories and this somehow enhances the immune system.
The downside of this is the researchers are not sure how long the effect lasts, but there is no reason at all why you cannot repeat the experiment without the biopsy. Here is how to do it:

Day One & Two: Your writing should xplore your deepest emotions and thoughts by really letting go about the most traumatic emotions in your real life (and us RD patients have plenty of those to draw on !!).  You could link your writing to your future, who you would like to become or who you would like to be and why.
Day 3. You could write about the same trauma from another point of view or how this event changed your life and explore especially such deep issues as make you very vulnerable.
Day 4. Be really honest with yourself and try to say what actions you are taking to wrap up these events or to say how they will benefit you in the future.

THEN THROW THE FOUR PIECES OF PAPER AWAY !! Make sure you only write for 20 minutes over four consecutive days.

The bad news, apart from them not knowing how long he effects last, is that they are not sure how Expressive Writing has these effects on the immune system, but they are saying that they think if repeated it will not be any different to the outcomes above. Also journal writing is NOT the same as Expressive Writing. So if you are going to have surgery, or start a new medication, it might be worth while trying this over four days. Let me know how you get on !
(You can also get a Podcast of this BBC Radio 4 Programme on All in the Mind and by Googling Expressive Writing and RA)
I wonder if writing my Blog has any effect – but it does spur me on just in case !

ON THE UP AND UP !

Life, for once, is on the up and up ! Last week I had this brilliant idea (I thought) for doing a survey of RD Medications and treatments as there seem to be so many out there and received quite a good response – thanks Carla !  But it seems as though the various RA/RD organisations were not at all happy with me doing this.  I got threatened with everything from Data Protection to having my Blog taken down…….whoa !  So it seems it is not to be.  I got really mad for a while and said I would finish my Blog, but was talked down by Pat and various other friends and relatives, so bye-bye survey and back to the Galloping Grandma.
Having been really down and despondent, Life as usual rocked the other way by first Pat getting out of plaster and getting over his broken leg really quickly and also Cooper (our labrador) getting over his knee replacement really quickly – oh how I wish mine had been as fast !!  But he’s not supposed to bounce or run for another four weeks, but nobody seems to have told him that !!
As I write, Pat is way up country in Galway doing his Skipper’s course so I am left to fend for myself – something I did for many years whilst he worked away.  Getting the socks on and shoes laced took a bit of contortion, but I eventually managed it and tomorrow my son Jason will be over to start work on the boat again.
What we plan is to use The Rosa – a Newfoundland Dory, restored and rebuilt by Jason, to do scenic and fishing trips from our local harbour down the road on the Beara Peninsula.  We first have to get licensed by The Department of the Marine and with this licence we can get our insurance for the boat and passengers.  Firstly though we have to get the boat weighed and this has to be done when she is lifted out of the shed by a teleporter with special scales on it than can weigh up to five tons and then put carefully on to her boat trailer.  All being well we will then take her down to the slipway and launch her for her sea trials. She has been in the sea before, but she had a really ropey engine that kept cutting out and overheating, so I donated my ‘going to Australia’ fund to buy a new, reconditioned engine which should work wonderfully !  Fingers crossed and I shall keep you informed of her progress.

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The Rosa

 
The lovely Spring weather has helped lift my gloom and I am making the most of the Vitamin D provided by the sunshine.  Also I’ve heard from lots of friends who will be visiting us again this year and it will be great to see them all.  Whilst I really appreciate time on my own when I can go and lie down if needs be anytime I want, I really love seeing friends and finding out what they have all been up to, even though I get stressed and sore. It’s worth it !  We are not planning any holidays this year, but when you live in such a wonderful, scenic part of Ireland and right by the sea, it hardly seems worth the trouble !!  But I hope all of you will get planning what to do to spoil yourselves, be it with a holiday or just having friends visit and feel the rush of those positive endorphins. I certainly shall !

 

 

 

FACTS & FIGURES FOR R.D.

First of all, sorry for there being no Blog last Sunday, but depression got the better of me and last Sunday I just couldn’t write ! Last Thursday I had to drive Cooper, our labrador, to the vet to have his knee replacement and straight from there onwards to Cork to get the hubby taken out of plaster for his broken leg ! Then drive all the way home, where despite my warnings Pat did too much on his foot and it all swelled up like a balloon !! So it was on with the ice packs and into bed with his foot elevated and suitable pain killers ! Cooper’s op went well and my son and I picked him up 4 days later and he is now crashing into everything (including the back of my legs) wearing a sort of plastic lampshade. Then the cat came in limping which was the final straw and I was not in the mood for writing !
However I have not been idle as over the past few days I have been astounded at the amount of treatments and symptoms I have read about for R.D. on Facebook. There seem to be no two the same and the amount of daily steroids given in the USA as treatment leaves me bewildered.
So much so that I have decided to compile a list of treatments for the many and varied medications given for RD and the after effects (good or bad) for each one.
I would very much like each of you to contribute to my survey. Just let me know which medication you take, how often and how you react to it. Especially if you have changed medication and how often since being diagnosed ?
I think that if we knew of alternative treatments that there are out there, it would help when we see our Rheumatologist, especially if we are having a bad reaction or strange side effects of the drugs we are on. Knowledge is the key to getting the best treatment for our R.D.
You can email me direct at sallyborst@gmail.com or contact me through my WordPress site at http://www.thegallopinggrandma.com

A HAPPY EASTER TO YOU ALL !

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SPRING IS SPRUNG !

Here in SW Ireland it is suddenly Spring and the sun is shining down into all those corners where cobwebs lurk and muddy doggie paw prints adorn the floor ! The rescue cats, Roobarb & Custard are living off a diet of baby rabbits, or sitting below the bird table waiting for one to fall off !  Cooper our labrador has discovered the delights of any muddy puddle he can find and has taken to sitting down in the small pond we pass on our morning walk.  I think he likes the cold water effect on his poorly knee and this week on our way to get Pat out of plaster, we have to take Cooper to the vet first too have his knee replacement !  Nothing like having everything happen at once is there ?!
I have sneakily asked my son Mark to visit us from Germany for 10 days to help cope with Himself and the dog as I foresee lots of lifting coming up, so he flies in tomorrow to Kerry airport from Frankfurt Hahn and Mum here has to go and pick him up.  Also I suggested to Pat that he could probably hoover whilst sitting in the Power Chair and this has proved relatively successful, so much so that he combined it with dusting everything he could reach up to waist level – so we are halfway there !
The nicest thing I have to report is that my Word for iMac code eventually arrived and I achieved its ‘Easy Download’ after lots of swearing and pressing buttons.  I then shut my eyes, put in the pen drive with my book on and did lots of praying ! Much to my relief it downloaded, pictures and all,  so caught up in the Springtime fever I wrote an astonishing letter to a Publisher and posted it off ! We shall see how that transpires.
When I wrote my last book ( in 1989 and pre. RD diagnoses!! ) I had to do lots of TV, radio and other such promotions, including The Late Late Show, so it has slightly caused me to wonder how I would cope with all that and my RD – doesn’t bear thinking about !  Writing a book leads to all kinds of other work, sometimes even paid work !  I can distinctly remember being asked by the World Wildlife Fund to travel to the Shetland Islands to write an article on Otter Conservation, along with journalists from The Times, The Telegraph and several others ! I had to fly to London, then to Aberdeen and thence to the Shetlands in the middle of winter.  Luckily I had taken one of Pat’s survival suits with me so I was the only one properly dressed.  I just recorded the answers to the questions asked by the other journalists, so I managed to scrape by, though we never saw a sign of an otter, except a dead one that they took out of a freezer which was waiting transportation to Aberdeen University and looked nothing like the real thing.  How do I know that ? Well, we have otters in the stream at the bottom of our garden, though I never mentioned that at the time !! Happy Days !
My RD has taken a pounding over the last few weeks and in desperation I went to my GP and asked for help. He has slightly changed my medication (from Cataflam to Arcoxia) and the difference in pain levels is remarkable. I actually feel much less sore, though I am still on the Humira and Methotrexate.  I’m trying to rest for an hour each afternoon, but the advent of Spring has tempted me outside and I’ve now got a sore back from trying to do some weeding! Such is Life and I’m wondering if Mark will remember how to weed after living in Germany for so long – let’s hope so !!

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Our garden in Springtime !

SURVIVING A CRISIS !

First a little background. I have moderate to severe Rheumatoid Disease. For my European friends who still call it Rheumatoid Arthritis, I am from now on deferring to our American cousins who have got fed up with the word ‘Arthritis’ and people automatically assuming that is all you have. For those new to my Blog, RD is an autoimmune disease that is incurable and affects many organs in your body apart from just joints. The drugs that are available for it have absolutely no effect on ‘arthritis’ and have varying effects on the chronic pain and severe fatigue that come as added extras to Rheumatoid Disease.
Next – I live on the Beara Peninsula in the far SW of Ireland. My nearest neighbour is about quarter of a mile away. We have beautiful mountains around us, clean air and dark skies and are about half a mile from the sea – the Atlantic Ocean, next stop USA ! So, sparsely populated, so much so that I know no-one else who has RD around here. Hence the Blog which has had the marvellous effect of linking me to the rest of the world and thousands of people who also have RD – so I am no longer alone from that point of view. I live here with my retired ex-Drilling Superintendent husband and although it is now two years since my last operation on my right foot, he looked after me wonderfully till 4 week’s ago.

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The Beara Peninsula

Crisis time ! He slipped and fell in the garden and broke his ankle, so my first very abrupt job was to drive him to hospital, after not having driven for 2 years ! Worst of all was parking by the hospital in the very busy car parks, but it does come back like riding a bicycle and we did the 160 mile return journey without too many scary moments ! He was plastered and put on crutches and told not to put his foot down for six weeks, so in a trice I became the carer instead of the cared for !
I can only walk about a quarter mile, but we have two dogs who needed walking, so it was out with my Quingo into the pouring rain, which I actually rather enjoyed ! This was after having to wake up in the morning, get tea and let the dogs out and then make breakfast. Help Pat dress and get him to the breakfast table. Anyone who has spent time on two crutches will know that it means you are unable to carry anything, so I became the Fetcher and Carrier. The house had to be cleaned so I dusted off my I-Robot Roomba and put my tired self into cooking lunch mode whilst it zoomed around hoovering the floors. Seeing it whizzing around reminded me that I had a Power Chair in the garage, so my son was called over and he got it working again for his Dad who was delighted at now being able to get around the house without the crutches and, in all fairness this made him very useful for all jobs involving bending from the waist – something that gives me alarming backache ! So he was put in charge of the washing and tumble drying, setting the table and at this very moment is cleaning all the cupboard fronts in our Kitchen that haven’t received such attention in years !! So not all bad.
Afternoons are spent shopping and Pat wants to come, even though he has to sit in the car whilst I shop ! (I did this for eight years during and after various operations). I can push the shopping trolley just fine and put the stuff from the trolley into the car, but getting home is a whole new game! in that I cannot carry anything heavier than a handbag without my wrists collapsing. The remedy for this was first to get Pat safely out the car and into the house, then go back to the car with a barrel trolley that I found in the garden shed and which I can push as far as the kitchen door loaded with the shopping. Then unload it slowly and get Pat to put anything away in places he can reach. I do the rest. Next comes preparing dinner ( how I would love a Cook/Housekeeper right now ! ) I actually love to cook, but when it has to be done every single day, it’s exhausting ! During the years when Pat worked away all over the world, I spent long months on my own pre and post op. I was very careful to only confine myself to a couple of rooms, eat ready prepared meals and sit in my chair and watch telly in the evenings. Now I have to feed dogs and cats, let them in and out the door (how I would love a Doorman too !) cook and serve dinner, clean up, load the dishwasher lock up and sink exhausted into bed. My knees, hips, hands and wrists ache and my walking speed is reduced to a crawl!
On the bright side, he only has two more weeks to go and then back to Cork for walking boots so I am just hoping he gets used to them very very quickly ! Also I have come to realise just exactly how much he was doing for me before the crisis occurred – but I am secretly longing to just be able to throw myself into my bed for an afternoon rest – what luxury that will be !!

LATE AGAIN !!

Here I am, at last, late again for publishing my Blog – for which, many apologies. I really have had the most hectic week with Himself in plaster and whizzing about in my Power Chair and generally improving, so I decided that the moment had come to get my second book “Butterfly Summer” out to some publishers.
It was sitting, almost finished except for the index, on my old IMac in a publishing file called IWeb. Never heard of that – well, neither had Apple ! I actually started writing it in 2005 and finished it (almost) in 2006, just before I got my Hip Replacement. This and following numerous operations for my Rheumatoid Arthritis took up the next ten years of my life and were not conducive to writing books ! So now I am two years after my last foot operation and getting on with my Blog, I thought to myself “why not finish it” and get it out to some publishers ? Little did I know that in the intervening years, Apple had got rid of IWeb and not replaced it with anything else. The app only gives you the choice of putting it on line (which has now gone!) or publishing it to a folder. Hooray I thought, I’ll do that. A million (slight exaggeration ) tries later, I still could not get it to move the files and the photos – of which there are many – to a flash drive so as to put it on my new IMac for final editing.
These attempts, (combined with much swearing and cursing), eventually worked, but I tried so often that I can’t remember how I did eventually do it !! So then I put the flash drive into my new iMac and it put all the words in a sort of porridge-like confusion into Pages, with no photos, of course !
What to do ? My new IMac doesn’t have Microsoft Word for Mac which the old computer did have and which I had managed to put the contents of the flash drive on. So I rang up Apple and ordered the new Microsoft Word for Mac for €150 and they told me the relevant download codes would be emailed to me. Wonderful, I thought. No email arrived, but a Shipping Order to say they had shipped it to me. Why ship a code which will take at least a week, when it could be emailed I asked another kindly soul at Apple through gritted teeth ? Well, it’s because it’s Microsoft and Apple don’t like each other and refuse to email it apparently, so I still haven’t got the download codes as I’m waiting for UPS to deliver them – though it has got as far as Dublin they tell me ……… only another 300 miles to go !!
So with all this going on I didn’t write my Blog. I didn’t even finish writing the index to my book as I can’t be bothered to try and remember how to put it on the flash drive….. who needs an index anyway ? I’m downhearted and fed up with the whole shooting match and I still have to find all the photos and download them separately on to my flash drive…Gggrrrrrrrrrrrrrrrrrr !
Mind you it has taken my mind off my RA which is a plus !
Hopefully back to normal next week……..