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 !!

A JOURNEY ROUND MY KITCHEN…

Since I got married some 42 year’s ago, I have had only half a husband ! We moved over to SW Ireland and almost immediately he went to work on the rigs – a month on, a month off. In other words he was home roughly half of the year. Over the last 40 years he has worked his way up to be a Senior Drilling Superintendent, but the one setback with this is that he often has to live and work around the world. For example, he spent the last four years living in Tunisia and I went up and back to visit him whenever I could.
I was diagnosed with RA (finally!) around sixteen year’s ago, so I have had to learn to manage on my own for a great deal of the time. I have my oldest son living about 20 miles away with his family and they are quite marvellous at helping out, but over time I have acquired various ‘aids’ to assist me cope and today I thought I would pass on some ideas to you.
Every morning after breakfast I walk our two dogs. Sometimes with me on my Quingo and other times with me walking slowly on foot. I need to use trail walking flick-lock poles as the lanes are rather rural and wear my neoprene mittens to get a good grip. These have the added advantage of keeping your fingers and wrist nice and toasty too !On my morning walk in summer.JPG

Back in the kitchen I have all the plug sockets up at waist height and, as I love cooking, I have a raised shower stool with handles to sit on by the kitchen counter ! In the dining room an old office chair on wheels means I can scud around without having to get up. The one step down from the kitchen to the dining room has a secure handle on the wall and there are more secure handles by the steps on the porch. These were put in by my son after I fell down the step in my walking boots and broke my right shoulder and left wrist, late in the evening and all on my own and I just couldn’t get up ! Luckily I always carry my mobile phone on me and rang erstwhile son to come and rescue me and meantime managed to push myself up against the wall and take off my walking boots. I thought that both my ankles were broken, but no – they were protected just fine by the boots. Anyway I learned my lesson to pay more attention to my feet the hard way, but it was also good to know that rescue was at hand should I need it.
Not being able to lift anything remotely heavy due to useless wrists, after visiting my daughter in Australia, I was introduced to an I-Robot, Roomba. This is a little robot vacuum cleaner that tells you what it is doing and scuttles around cleaning the floors all by itself and so I now have one of these as well ! You can program it to start at any time you like and so I thought I would get it to hoover before I got up in the morning and eat my breakfast with beautifully clean floors. This worked well until one day Cooper our labrador got an upset tummy and did a rather smelly pooh inside – all before I woke up. The Roomba was delighted – no longer just a few dog hairs to remove, but a big steaming pile of you-know-what and it set about spreading it all over the kitchen floor into even the furthest corners !! There was nothing for it. I just had to put on plastic gloves and take the robot to pieces and get out all the bits it had tried so valiantly to suck up! Plus practically hose down the floors, the chair legs and even up the walls. I got the poor I-Robot back together and it still works, though now it speaks to me in Italian for reasons best known to itself !!
Not being able to open a jar of any kind, I have a marvellous Culinare One Touch which is a battery driven thingie that you place on top of the can – press the button and it opens any size of jar. You don’t even have to hold it at all. I also have a large handled knife, fork, spoon and teaspoon. Like most aids for the disabled they were fearfully expensive, so I only have one of each. A steak knife with a wooden handle works well for most things and now I ask for one in a restaurant if the ones provided are those nice shiny metal knives that just rotate in my non-existent grip.
In my experience there are all kinds of aids for the kitchen, but you just need to see what it is that you really need – even if it’s just a seat and an old adjustable shower stool no longer needed works just as well as a posh new one!