Living in Pain and not remembering why

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Living with dementia can be strange because you don’t always feel like there is anything wrong with you.  In the early days, you know that there is something ‘not quite right’ with you but you can’t always put your finger on it.

I don’t feel like I am any different to any person over 60 whose behaviour and memory is starting to get a little wonky, but in reality, there are things that are creeping up  that I am not comfortable with about what is happening to me.

I keep forgetting what it means to live with Fibromyalgia.   I live with pain 24 hours a day, 365 days a year, in my feet, wrists, hands, knees, back – hell everywhere really.   So when my fibromyalgia is flaring up and I am so debilitated by the pain and fatigue, I should not wonder what on earth is wrong with me.    I toddle off the the Doctor’s to find out why my finger is so swollen stiff and excruciatingly painful with a lump on the joint (which later disappeared).  At the same time I tell him my glands hurt, my eyes are sore, it is uncomfortable to breathe and I am in so much pain I can’t get out of the chair.  I sleep for hours because I feel so ill, but I can’t sleep at night because the pain is so bad.

I have some blood tests done, even though he says he thinks it is just my fibromyalgia……..I go home and feel a fool.  How did I not remember how ill my Fibro flare ups make me.  Now I feel so guilty that I am beginning to recognising that this is happening every time it is at its worst.   I simply forget how ill it makes me.

I think this is to do with my dementia.  Yes, I function fabulously day to day, but living on my own has its drawbacks.    This is one of them, having no-one to suggest to you that this is simply a Fibro flare up, and can I remember how it was having the last one?   How bad it got, how ill I was.   No cooking, cleaning, in fact daily living just stopped because I was not able to do anything.  ‘Fibro Fog’ meant I felt more confused and forgetful than usual.

When these times arise and I am sitting amongst the mess of my home, living off quick snack type foods, too exhausted to wash, I look at whether my dementia has worsened.  I think I am less able to be spontaneous than I have always been.  I find it harder to ‘sort’ things out and it takes me more time than it should.   There are times when I think ‘why didn’t I think of that?’ when something obvious has been pointed out.   I feel like I am forgetting a lot of things that I have learnt.  Recipes I have cooked forever, people’s names, places, things in my past.  However, having dementia means I always adapt and not worry – try not to sweat the small stuff.

So, right now I am in so much pain without any painkillers that will touch it, waiting for it to dissipate enough to function normally again and somehow I need to make myself a reminder to understand the next time this happens that the possibility that it is my Fibromyalgia and to wait but what happens when I can no longer understand what is happening?

Travelling with Dementia

My experience of holiday travel with dementia with hopefully some useful tips.

I recently had a wonderful holiday in Tobago.  I have fallen in love with the island as it is sheer paradise.  I felt there was nothing to do but relax, recover, swim, eat, relax, read books…..I read six books in a week, and exercised more than I have in months swimming several times throughout every day.

Travelling when you have dementia however early can be horrendous.  The trick is to plan well ahead.   Even with booking my ‘last minute’ holiday knowing what makes it less stressful helps the planning.  What works for me may not work for everyone but maybe I can say some things that you may not have thought about.

  1.  Getting to the Airport

I checked the coaches and the trains.   From where I live there is a train that goes from my small local station to Reading – a major station.  Then from Reading there is a train to Gatwick Airport in UK.  Gatwick Airport trains even has its own platform.  However, most of the trains that I wanted that day appeared to go to London which meant travelling across London by tube to another train station which is not good for me.  So I kept looking and found that a direct train to Gatwick Airport started at from 2pm and I booked that one.  From Reading to Gatwick Airport in one go – perfect for keeping distress down.

I need to know what platform the service goes from in advance, so that if I am on the station previously I check out the platform so that I know where it is.

2. Avoiding the stress of travelling

I worry.  I get distressed if I think I am going to be late if there is a time deadline because I have little sense of time these days, also because I know how unpredictable the train service can be with delays and breakdowns.

So, I looked for an overnight stay at an hotel at the airport.   I booked a room for my daughter and I online at the Hilton Gatwick South Terminal with a great deal.  Checked in online so that I only needed to pick the key up.  We both met up there, me being the first to pick up the keys and relaxed with a glass of wine whilst I waited for her.

Food – I knew from a previous experience that the hotel is a very short distance from the terminal so we went there for a cheaper meal that suited us fine.

In the morning we were up, showered and ready to go.

3. De-stressing at the Airport

We had pre-booked the Airport Lounge for a relatively small cost to wait for our flight after checking in our bags, which we also did online.  This makes things so much easier and quicker.  The Lounge offers a good range of breakfast, tea, coffee, drinks, newspapers, comfortable seats  which are all included in the price and is quieter.  It is definitely more relaxing that sitting in the general area with lots of people.   The bustle of people can be more stressful when you have dementia because it is overwhelming, so airport lounge is a great place to counteract that.

4.  The Flight

Choosing your airline and seat I think is important.  When you are fit and able you can tolerate a lot of things.  In the past I have flown with the cheapest Airlines and laughed at cramped conditions and poor service, but then have paid next to nothing for the flights.  Now I have dementia, I must make it an enjoyable experience from start to finish to have a good holiday experience.  One day I will not be able to travel so I want to make sure that I can make travelling pleasurable for as long as possible.

I choose a good airline.  Personally I fly with British Airways.  It is not the cheapest but has the attributes to make it better for me.  I usually pay a bit more and fly premium economy which is better than economy or standard.  With it you get more seat room, and are offered  a slightly better steward service.   This holiday I flew economy – ten and a half hours of wishing I had upgraded to have a little bit more room!  15 years ago it would have been absolutely fine but not now.   Now it is important to make things easier, less stressful and pleasurable as possible.

Walk about on a long flight.  I walk up and down and don’t care how ridiculous I look I join others in a bit of space to exercise.  I wish I had bought some flight socks, because my feet and legs started to swell on the flight home.

Drink Plenty of Fluids.   Thing is about dementia I forget to think about whether I have drunk enough liquids if I am not at home.  I usually drink copious amounts of tea and (weak) coffee throughout the day, its just automatic.  Cup empty = make another.   When I am out and about it is another matter.  I never think about eating or drinking.  I try and take a bottle of water with me when I’m out because it reminds me to drink.

So on a flight, you need to keep drinking a small cup of water every so often.  On my Tobago flight I found that the stewards did not come round constantly with glasses of water, but you could get up and ask for some whenever you wanted to, but I didn’t think to.  Finally when I was not feeling great I went back to get some water and was given a good amount and felt much better after that.  So you must remember just because someone with Dementia doesn’t ask, it is important to remember to keep drinking water during a long flight.

5.  The holiday

I have realised that it didn’t  matter if I didn’t travel to see much of the island.  Where I was was perfect for me.  It had the peace that I craved to enjoy myself.  We walked along the beach, up the coast road, to the local shop to buy water.  There’s a tale – there are some guys who are looking out for wives and we were followed by a guy with no teeth trying to tell us he was a good catch because he had a house and some land, he was also trying to tell me his age – 63, trying saying that without teeth!  Then a refuse truck came along, stopped and a young guy got out and started haranguing our follower to ‘leave the ladies alone’ and ‘stop harassing’ us.  It was very funny!

Even though there were far too many steps for my arthritis and fibromyalgia it didn’t matter, I found the route with the least steps to the beach – sorted.   Being comfortable with just watching the birds, sitting in the shade, a bit of swimming was a great holiday.

Returning home was the same.  I caught a direct train and it there was no stress.

Everything I do now I plan.  I am lucky enough to be comfortable with a computer and being online.  So I research.  I print everything out and I put it in a folder.  I print out itineraries for whatever I am doing if I am travelling so that I have one piece of paper for my handbag to check on ‘what do I do next’.

Next holiday is later this year so I shall be starting my planning a coupe of months ahead of time and start saving for it!