Holidaying with M.E.

This will be a short blog today.

For the last week I have been on a cruise or Geriatric Cruise as I like to call it. We have already been to two ports in Norway and three in Iceland. Today we are in Reykavik. Over the next few days we will go to Faroe and to the Orkney Islands.

I have, as to be expected, been doing far too much. To counter this I have slept during the day as much as possible and had an early night every night! Land of the midnight sun – perhaps but I am certainly never awake to see it!

I have also discovered the joy of the onboard spa (thank you parents). It seems every time I feel I have done too much, just spending a few hours in their hydrotherapy pool and heated benches, sleeping and meditating, and I’m okay again.

It is a dangerous path I’m currently treading, of this we are very very aware. On the other hand, hopefully by being very careful and only doing too much when it is really called for, I will get away with it.

Luckily the ship are very kind and on at least three occasions my three course meal from the restaurant has been delivered straight to our room so I could eat in bed.

Today we took what we felt was the greatest risk of all but one I almost didn’t mind having a relapse for. Today we took a Super 4×4 Into the mountains and valleys around the capital. I was sure this would do me in but frankly I didn’t care. It was amazing – some of the most spectacular scenery I have every seen.

Steam seemed to rise from the mountains everywhere as cold springs met magma, heating the water – creating steam. Astoundingly, it was amazing to see mile after mile of pipeline carrying hot water from pumping stations to the capital 30 miles away. The water at 300 degrees is pumped from underground – the steam is used to generate electricity and the water is sent to the cities. Apparently 90% of houses in Iceland use clean energy.

These super jeeps were amazing, thundering up and down mountains, tearing through streams. Incredibly though they didn’t have the debilitating effect I assumed they would. I rested for two hours on return and was ready to see a little, a very little, of Reykjavik.

So this trip which I thought was the easy holiday may not be quite as easy as I anticipated but getting to Iceland, the country I have dreamed of visiting my whole life is worth it. I have a lifetime to rest and recover. I only have three, as carefully managed as possible, days in Iceland.

I do not recommend that anyone pushes it as I have been doing every few days recently though perhaps if you at least have a revolutionary spa to turn to when you get back.

So hello from Iceland, I’m well and being careful (well most of the time!)

Thanks mum and dad for our fabulous excursion and the rejuvenating spa pass.

Will write again on my return to normality.

P.s. I haven’t proof read this so please forgive the horrific grammar errors that I would be horrified if somebody else made – I’m in Iceland today so who cares!

Things Just Aren’t As Good As You Think They Are – Sorry

People, in general, are very nice. People, in general, only want the best for you. People, in general, care that you are ok. People, in general however don’t want to hear bad news. It is much easier to support a person when there is something positive to say about them. It is harder to support a person when something negative is happening. That doesn’t mean people don’t want to offer their support, it is just harder to give.

Over the last two weeks I have come across a new emotional aspect to my illness, one that I hadn’t expected. For about two months I had been making solid progress. Every week I increased one of my activities by 10% and was able to consistently do this. I had gone from walking about 0.5 miles with a break half-way to walking 1.15 miles with a break half-way. My friends and family were so proud of me and so happy for me. I was so very proud of myself and so very happy for myself.

Every few days I would speak to my dad and he would tell me just how well I was doing and how great it was that I was making progress. He was so supportive of me and reassured me that it didn’t matter that progress was slow but what was important was that progress was being made.

My boss was delighted that I was making progress and was more convinced than ever that I would be eventually back at work and eventually working full-time.

Everyone had been so supportive for the first six months when progress was extremely limited and indeed for the first couple of months when my health had only gone backwards. So many people had worried about me and offered me advice (some just plain ridiculous but appreciated). I had felt that I had the world behind me egging me on to recovery.

About two weeks ago my health began to slowly go backwards again. I had reached a plateau in progress but hadn’t consciously recognised that I needed at this point to stop and consolidate my progress. For two weeks my health has been slowly going backwards. Old symptoms such as pain had begun to slowly return. Walking my now 1.15 miles every second day resulted in fatigue, breathlessness and weakness. It took me two weeks to realise I needed to go back two weeks on my progress and stay there until I felt I was ready to start making progress again.

This isn’t a relapse, not quite, but it is a stopping of my progress. Progress I (and my family and friends) had been so very proud of. The progress that had given me and my family and friends such confidence that recovery would eventually be possible. During these two weeks as my health slowly dis-improved, family and friends have continued to say how proud they were of my progress. How great it was that I was making all these big steps. Wasn’t it great I was feeling so much better?

The problem therefore that I came across, that I hadn’t expected, was how do I tell these wonderful people that this progress they are so proud of me for has stopped? How do you disappoint people? How do you say something that will make them worry? I had a slight sense of failure. I was the one who had pushed things too far and had caused myself to go backwards. I was the one through my blogs and other methods who had filled them with such hope and happiness – how was I going to dash all of that?

My husband of course had known I was pushing it and has constantly been trying to convince me of this and encouraging me to slow down. It was of no surprise to him therefore when I had to go backwards slightly. He does not see this as failure and in my heart of hearts I also know I haven’t failed. I have always said to anyone that would listen that M.E. is a fluctuating illness, that my progress would inevitably meet some obstacle it would struggle to get over.

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I knew this but I still felt I had failed. Telling others, who unlike my husband, weren’t physically around to see how I had begun to struggle again was hard. They seemed so happy in their pride in me. They seemed so happy in their hopefulness at my progress – I just didn’t want to destroy it.

Of course my reality was that I needed to tell them. I needed their support and by not telling them they couldn’t provide me with the type of support I so very much needed. Their constant refrain about how great it was that I was doing so well was in fact (unintentionally) not support at all but undermining my confidence that I could bounce back from where I was.

Of course my telling them didn’t make them be less proud of me or less confident that I wouldn’t eventually reach the point of some form of recovery. They quite logically said that I had always expected the road to recovery to be potholed. They quite logically recognised that if I had made such progress before – I could make such progress again. I am sure they were disappointed and sad for me but it didn’t alter their support or love. For this is all that really matters.

M.E. is a disease (perhaps like many others) that constantly throws new emotional hurdles at you. You get your head around one hurdle then bam you are hit in the shins with another one. At times it can feel like the emotional aspects of this illness are harder to deal with then physical realities of it (though at times it is the other way around).

I have always argued that openness about the illness is key to helping people understand what support and how much support you need. Openness is however something that is very difficult to consistently do. As humans we have innate desire not to disappoint or worry others. Often being open requires you to deliberately disappoint and worry people. People need to know however your reality – without this they are ultimately headed towards an even greater disappointment.

I had been dishonest with myself, I had known I was pushing my baseline and yet I had allowed myself to continue. Desperate that when we went on holidays today that I would be able to do so much more than I previously could. I had been dishonest with others by allowing them to continue believing I was making great progress. If I had allowed this dishonesty to continue, would it eventually have been unsurprising if people had begun to distrust me when I later said I was doing well – even if this was true?

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Being open therefore is crucial. People, especially those close to you, need to know your reality, where you truly are with your illness. It may not be where they truly desire you to be but that doesn’t prevent you having a responsibility to be honest and open to not only others but to yourself as well.

A Relapse – Look at How Much I Have Achieved!

The inevitable has happened, a combination of factors came into play and consequently my last few days have been quite difficult. It was not unexpected, in fact I knew towards the end that I was definitely facing a relapse.

The one thing that is guaranteed with this illness is that it will fluctuate. You can be assured that your feeling of good health will simply not last. Something will inevitably happen that causes you to go backwards. Acceptance of this makes the inevitable relapse easier to deal with. It sucks but at least you don’t feel shock.

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On Friday night, my husband and myself went out for dinner with some friends. We had some initial confusion when we got there about numbers and after sitting down had to move to another table, then some of our friends were late and we didn’t order until about forty minutes after getting there. Service was also a little slow. All told this meant that it took a much longer time than normal to get to the end of our main course. The end of a main course is always my signal to leave. Staying any longer guarantees a collapse. Unfortunately the end of the main course that night was probably 20 minutes later than I usually stay for.

On Saturday morning, I woke up a little stiffer and sorer than normal and for the first time in weeks, I felt a sense of real fatigue. I can clearly differentiate between a sense of tiredness and exhaustion and a sense of fatigue. Tiredness and exhaustion can be overcome by proper sleep, fatigue can only be dealt with by rest and time. Consequently on Saturday, I rested all day and only went for a very short walk.

Sunday morning I felt like I had bounced back. I felt energised and able to get on with life again. As a result, my husband and myself drove to Worcester. We had a very gentle walk to a coffee shop. It was clear very quickly however that I wasn’t ready for a day out so we finished our coffee and went home. By the time we got home I was exhausted.

Very sadly at that point I heard our very elderly neighbour screaming in the garden. His also elderly partner had already called the paramedics. He had had a very bad fall in the garden and his partner was deeply shocked and upset. Consequently my husband and myself spent several hours with him and the paramedics. My husband helping out the paramedic who was initially alone and I tried to calm down his partner. This was both emotionally and physically exhausting. The paramedic even asked me to go out to his car to get a neck collar for him, that was fine but his car was parked down the road. For a split second I questioned whether it was wise for me to do this but realised that in this situation I didn’t matter so I went.

My husband drove our neighbour to the hospital to see his partner. While they were gone, I collapse on the sofa and slept. On their return however our neighbour joined us for dinner. He is a great guy and was deeply in shock, we didn’t like the idea of him being alone in that state. Unfortunately (and fortunately) he stayed for two hours. By the end he was much calmer and more relaxed – objective achieved. Unfortunately for me however it meant I had to sit for two hours on a chair and went to bed about an hour later than my good day bed time.

Put all my weekend together and the inevitable result was a relapse. I spoke to my M.E. Support Worker yesterday and we both agreed that although the aim is to avoid at all costs doing too much so it leads to a relapse, there will always be a time and a place where trying to avoid doing too much is probably a bad thing. Can you imagine if I had sat in my sofa hearing an elderly gentleman screaming and saying, “No, I’m not going to help him because I have used up all my activity points today”? That would be beyond wrong.

So although yesterday and today I am far more tired than I should be and in far more pain than I have been in for a significant amount of time, I know in my heart that it doesn’t matter. We did the right thing. Anyhow as my husband said, six weeks ago even half as much activity would have lead to a collapse and he would have had to effectively carry me to bed. The next day I would have been barely able to get out of bed. There was no collapse, never got to that point. Yes, yesterday I either lay on the sofa or lay in bed but even in those circumstances I managed to walk 0.45 of a mile. That would have been simply impossible not long ago.

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So perhaps instead of looking at this relapse as something negative and scary, I should look at it as proof that I am making progress, that my body is beginning to heal itself. Yes I will have to continue to be incredibly careful about doing too much and I shall certainly not be extending any of my activities this week but I am not in as bad a state as I could have been. For that I am incredibly grateful.

There are fewer blogs at the moment because I am working on a large writing project and I must be careful with my energy expenditure!

See also my non M.E blog Me Opinionated! Really?