Frustration

At the very top of my must-go-to bucket list is Iceland. As a young child, I watched a TV series set in Iceland all about a young boy, his family and very importantly his horse. I don’t recall the name of this series or indeed even the storyline. I do recall however quite vividly – the landscape. Even as a very young child I was able to appreciate that Iceland was a place of splendour unlike anything I had ever seen before. I was determined to one day visit it and see for myself the place I had fallen in love with as a seven year old.

Over the years my ardent desire to visit Iceland did not wane. As I learnt more about the country, reasons to visit it just kept piling up. I wanted to bath in the Blue Lagoon, a spa in Reykjavik heated naturally by geysers. I loved to ride so couldn’t believe it when I learnt that the Icelandic pony not only could carry vast weights but also had an additional gait between trot and canter. I read about the beautiful fjords, 24 hour daylight in the summer and its tiny population. Everything I learnt made me want to visit the country more and more.

It was therefore with great excitement that myself and my husband started to plan a mid-term break in Reykjavik for February, 2014. We were going to go horse-riding, trekking across lava fields and glaciers, whale watching and swim in the Blue Lagoon. We even hoped that my best friend, Sarah, would join us. Five months prior to our departure date I ended an ordinary working Friday with an horrendous cold and the rest as they say is history. February mid-term break came and went and we didn’t fly to Iceland. My dream seemed to have been crushed.

Having finally decided to go on holiday, eight months after becoming ill, we chose to go on a cruise taking us to Norway and Iceland. There was more about the realities of holidaying with M.E. in an earlier blog. It seemed therefore that my dream of visiting Iceland was going to come true. Yes, it would be a modified version of the dream but it would at least, I felt, affirm whether or not this dream, idyllic place was all that I imagined it to be and whether it deserved its place on my bucket list.

In Norway, I had perhaps done a little bit too much the first day so on our second day I had to be careful and only disembarked for a brief coffee. I wasn’t bothered though – we were in beautiful surroundings so quietly resting looking at the view was acceptable.

Iceland, however, was all that I dreamed it would be. Our first stop Akureyri, in Northern Iceland, was absolutely stunning. One of Iceland’s largest towns (with a population of 17,000), it was surrounded by the most beautiful of mountains, still capped with the winter’s snow. All I wanted to do was get off the ship and wander around starring at these stunning views.

I rarely felt really frustrated with my M.E. but that day I could have cried. My mind and my husband were telling me to be careful but my heart didn’t give a damn, it just wanted to forget that the body it was attached to was ill. Despite a multitude of warnings from my husband, I insisted we climb up numerous steps to a church and then higher again to a botanical garden. I ignored all the warning signs that I was beginning to struggle. So what if I had to stop and rest continuously and was finding myself out of breath continuously – my heart was telling me that that was okay, I wasn’t pushing myself too much.

In total I probably walked about 2 miles, to and from the ship. I just wouldn’t allow myself to believe that that was stupid. Prior to going on holidays on a good day I could walk a mile. Why I allowed myself to believe that what I was doing was okay is beyond me! Or is it? The reality was I didn’t want anything to spoil my dream. Iceland had been my dream for almost 30 years, allowing myself to restrict my exploration was too heartbreaking to actually do.

Of course by the time I was returning to the ship, I was in a state of near collapse. Every couple of feet I had to sit and rest. Moving one foot in front of the other was incredibly hard. The gangplank into the ship was not unusually steep but that day, I had to literally drag myself up it, hanging onto the railings for support. Three hours after landing in Iceland, I was back in bed, a location I stayed in more or less solidly for the next 20 hours.

It meant of course that on our second day in Iceland, I could do little more than stare out of the window at the wonderful town we had found ourselves in. There was no way that I could physically go ashore. My husband tendered ashore alone, to wander around my dream country without me.

Normally, my frustrations don’t get in the way of my doing the right thing. Normally I am quite good at balancing what I want to do with what my body can cope with. Normally I am quite good at putting aside my desires for the good of my health. This however was an occasion where I almost felt like I had no control over the situation, I was going to do too much because I wanted to and well to put it simply that was that. Of course, the reality is that because I allowed my desires to overtake my health needs, I therefore lost a day in my dream country. If all I had done was wander a little around the first town, drink several coffees and admire the view then surely on my second day in Iceland, I would have been able to do the same and not have been left behind while my husband experienced my dream.

It is undoubtedly normal to feel frustrated. How can you not? Usually, suddenly and unexpectedly everything you understood about who you were and where your life is going is ripped away from you. Suddenly you are expected to manage every second of every day and constantly assess and reassess how you are feeling, should you rest or is it okay to continue. Of course it is normal to feel frustrated about what you might view as a lost future.

The Sochi Winter Para Olympics were on the first winter I was ill. I remember watching these amazing paraolympians do the most amazing of things: slalom blind down a course that would have challenged the best skiers; war veterans who had lost both legs ski jumping. It was incredible. These people had been through hell and back and yet they were brave enough and strong enough to now be competing for their nation. It seemed incredible. I do remember though that it also frustrated me greatly.

I have no doubt that should I have gone blind or lost a leg that I would not have been skiing for Ireland at the Olympics. Pre-illness I was in no way sporty and that surely would not have changed. What frustrated me however was to think that even if I wanted to, even if I suddenly had the desire to go ski jumping, I couldn’t. It seemed unfair that these people were able to tackle their physical disability and win their battle with it.

I, on the other hand, no matter how much I desire to ski down a daunting slope, while I have M.E. won’t be doing it. There is no getting around the disabling factor of fatigue and PEM. There is nothing you can take that will prevent you from getting it. Strenuous exercise of any description can cause you irreparable harm. The limiting nature of this I find very difficult to deal with. The deep frustrations it cause me never go away. Just usually I can suppress my desire to do something by considering the repercussions.

Dealing with your sense of frustration in a sensible way is all about learning to be ill. For me in a way it is about sharing my sense of frustration through my tears or through my words so that those around me understand why I want to push so much when theoretically I am ill. Allowing my frustrations to win over what I know is sensible is never going to be the right thing to do.

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You will come across lots of people who will argue that you should abandon all your dreams and hopes. This disease means that you will never live your life again. That this disease should be what defines you. I, personally, cannot see how that can in any way help your mental health. I believe recognising that certain things frustrate you means you still have dreams and aspirations that go beyond simply being ill. I believe that these can provide you with hope and the motivation to keep on fighting this disease. I need something to get me up in the morning and to make me smile when all I want to do is cry – without dreaming and the inevitable frustrations that will follow, I do not know what would keep me going.

Of course who am I to say how you or anybody else should feel about your illness or feel about your frustrations but who can argue against the power of positive thinking.

On a daily basis I have to tackle the limiting nature of this illness. The old me, who never really let anything stop her, is still there so of course at times I just want to scream at the world and ignore all the sensible advice my mind and those around me give me but I have learnt to ignore them at my peril.

What frustrates me must simply go back into that box entitled, ‘Not for Me, Just Yet.’ That doesn’t mean I should give up on my dreams and wishes, rather it means I shouldn’t let my inability to do them depress and anger me.

I’ve Got to Get Out of This Place: Holidaying with M.E.

Having M.E., you live in a self-imposed bubble. A self-imposed bubble but equally a bubble over which you have no control of its size. For some its radius is a mere few metres, for others it is several miles. This is however always an almost completely translucent bubble, few from the outside can see it and although you are always aware of it, from the inside you too can only sometimes see it and you can easily allow the very existence of the bubble to slip your mind.

You can considerable expand your bubble by using the power of adrenalin. Adrenalin pumps up the bubble considerably, enabling you to walk further or stay more active longer. Adrenalin however fundamentally weakens the structure of the bubble. Adrenalin does not add extra material to your bubble, your bubble just becomes thinner and thinner and thinner. While it will for a long time remain intact, prolonged expansion using only adrenalin means that its walls become weaker. It may seem like you are coping with the expansion from outside of the bubble but in the inside, you are feeling weaker and weaker as everyday goes by. Ultimately adrenalin can be a destructive force. Allow it to keep expanding your bubble synthetically and one day it will suddenly burst. Without the safety of your bubble, you absolutely collapse, unable to complete even vaguely what you could have completed prior to your bubble expansion.

There are things you can do to try and strengthen the structure of your bubble: you can rest a lot more, you can go to a spa but ultimately these are just sticking plasters. If you continue to do more than your bubble makes it safe to do, your bubble will burst.

This was my experience of holidaying for the first time with M.E. For 10 days I did so much – I walked 2 or 3 times further than I should have, I sat for dinner for two hours every night and socialised, I lay on a sun bed ‘resting’ surrounded by the chatter of other guests. I knew I was taking a massive risk by doing this so tried to counter it by ensuring that I rested in our room during the day, I went to the spa every day, I went to bed about 8 every night. My bubble still burst and it burst in quite a dramatic way. I went from one minute feeling fine to the next minute barely being able to walk across a room and desperately nauseous at the sight of food.

What was the catalyst that lead to this collapse? I simply wrote for just a little bit longer than I should have. The catalyst wasn’t that I walked too much around town or went out dancing at night. You could argue that there wasn’t really one catalyst to that collapse but actually very many – what about the walking too far every day for 10 days and the socialising over dinner for two hours every evening? You would of course be right. When you are having a lovely time, it is very easy to allow yourself to believe that just because you feel okay at that very moment or even that you feel okay the next day, that prolonged over-exertion won’t lead ultimately to a collapse.

This is the power of adrenalin. Adrenalin masks how your body is feeling; it tricks you into thinking that your body can do more than it actually can. Adrenalin takes no prisoners however – when it decides it is time to disappear, it will disappear and what’s more it will take your energy with it.

Am I then advising against holidaying if you have M.E.? No, not at all. I am however advising that if you are to do it, you don’t forget that adrenalin may well cause you to do far more than you really know inside your little bubble, you should do.

I reached the point after about 5 months of being ill where I was desperate to get out of the house, out of Stratford upon Avon and go somewhere new. I wanted to see new people, new places. I wanted to eat new food. I wanted to wake up in a new bed. I just wanted everything to be different. Throughout my illness I never suffered from cabin fever. Normally during half-terms and summer holidays I would come down with cabin fever within a week or so. I knew I was very ill because I never felt that way. Yet I was still desperate to get away and to be in a different environment. I never felt bored just sick of being in the same place all the time.

It is very depressing to hear your husband and friends and family tell you all about their great holiday or where they have been for work. We normally went on holidays three or four times a year so the concept of having months stretching ahead of me with no plans did get me down.

We hummed and ahhed about how we should go on holidays. Initially, I thought an all-inclusive resort somewhere would be perfect. I wouldn’t ever have to leave the hotel unless I wanted to and was able to. We had, however, never been on such a holiday. We always liked to travel independently. The adventure of searching out where to stay and where to eat was all part of the holiday. This time however we knew that that was not going to be possible.

The other draw back of course to going on holidays to some hotel somewhere was simply the process of getting there. We knew that Chris would have to carry all of our luggage as I was no longer able to do this. We knew that just getting to the gate in an airport might be enough to cause Post-Exertional Malaise, never mind adding in a flight and then transfers after that. It seemed therefore that a hotel someplace warm was probably out of the question. We had also learnt that a hotel in the middle of a city was also out of the question, having experienced the repercussions of this after our trip to Cardiff.

What then was the solution? A year earlier, in desperate need of a holiday, we had gone on a very last minute six day cruise from Barcelona to Dover. It had been perfect for what we needed – a few days away where we had to think about absolutely nothing. We decided that while cruise ships tend to be inhabited by residents significantly older than ourselves, it provided the perfect compromise that we so desperately needed. 8 months after I got ill, we sailed from Southampton to Norway, Iceland, the Faroe Islands, the Orkney Islands and back to Southampton. In many ways it was the perfect holiday although if I was to do it again there would certainly be things I would bare in mind.

I hadn’t read much about other people’s experiences of holidaying with M.E. and indeed in hindsight perhaps I should have. Do I regret going on holiday? No, but I really wish I had known to consider certain things before we left. Would I do things differently if we were to go again? Of course.

As always, it seems that holidaying with M.E. is all about trying to balance the practical management of this illness and the emotional desire to ‘be on holiday’. Without a doubt this was a balance that 80% of the time I got wrong. Except for one day, I got it wrong on every port day. Sea days were slightly easier to balance. The question was always, ‘is this activity worth the potential pay back?’, ‘is the payback going to worsen my illness or is it just going to be temporary?’ There were a million decisions to make every day that had a direct impact on my health. Of course what I didn’t consider at the time (and I don’t understand why) was that even a seemingly temporary impact on my health actually contributed to the overall state of my health.

Being ill at home is so much easier. You learn what the particular parameters of your illness are – you understand what your bubble really is. You know just how far you can push things. You know just how far away something is when you set out for a walk. While after a week of my holiday, at least when it came to the ship, I could answer some of those questions, it was the added peripheral stresses that were often unpredictable. You may be able to walk to the coffee shop fine but it seemed there was no real pattern to how busy or noisy it would be. So one day you would walk there and there would be plenty of seats, even seats away from the rest of the cafe. The next day, at the same time, it would be filled to capacity but there would be one little seat in the centre of all the noise. The next day, at the same time, there would be no seats so you would have to walk further than you intended so you could sit in a different seating area. All of these things were an unexpected drain on me.

In addition, we never really considered the location of our cabin, except that I requested it was close to a lift so I wouldn’t have to walk far. It was and that was great, except what about the 800 steps that were needed to walk to the restaurant every night and the 800 steps back? Luckily, the spa was almost directly over our cabin so I didn’t have to walk far to there. What about the library that was my quiet escape often during our holiday – well that was probably another 500 steps there and back. In relative terms, nothing practical that I wanted to do was close to my cabin. When I left, every second day I would take 4000 steps, on holiday I took anything from 6000 – 10000 a day. An amount that was absolutely unsustainable.

Consequently throughout our holiday, I was very fatigued and spent much longer lying in bed than I normally would – but it was the only place on the ship I could lie in silence. Equally, as I said above, I don’t think I really understood the extent to which my body ran on adrenalin, day after day. In your little safe bubble at home, you get used to understanding whether today should be a gentle day or not because your body tells you so. At home however your body rarely runs on pure adrenalin. Your body once you tune in to it and can hear it, will more often than not tell you straight up what it needs to do or not do today. Adrenalin however masks this.

So, if you are the sensible one and feel you should research holidaying with M.E. before you do so yourself, here is my list of pros and cons about holidaying but in particular cruising.

Pros

1. Embarkation and disembarkation in Southampton meant no flights or transfers.

2. Luggage was collected straight from the car and placed in our staterooms – no dragging of bags everywhere.

3. Having arranged Priority Embarkation, there were no long airport queues. The whole process from car to being in my stateroom took about 15 minutes. Although my dignity didn’t allow me to use it – I could have been wheel-chaired on and off the ship – this I regret not doing – it would have at least reduced my energy requirements on two occasions.

4. One of the most important pros was the onboard spa. I may not have been able to use any of their treatments but the combination of their hydrotherapy pool and heated stone lounge chairs rescued me from collapse on many, many occasions. It also gave me somewhere very tranquil to lie still and meditate all day if that is what I wanted or needed.

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5. I registered myself as disabled. Among the staff that needed to know there was an awareness of my illness and people were extremely kind to me.

6. On days where I couldn’t go to the dining room to eat, staff would arrange for my meal to be sent directly to our stateroom. I spoke to the Head Waiter about this on our first night.

7. I told the Maitre-d about my illness and how having somewhere in the restaurant a little away from the crowds would help. We were given a table that backed up to a window – I could sit with my back to the window – therefore reduced somewhat the noise around me.

8. Room service was included in the price so if my health dictated it, I would never have had to leave my stateroom. I had breakfast there almost every morning and had dinner there 5 times.

9. Every day the ship was on the move, so everyday my view changed. I didn’t have to sit bored by the same pool every day.

10. There were very few children on board so I never had to deal with screaming kids and tantrums. The atmosphere was continuously tranquil!

11. On sea days there was a multitude of activities on – while I wasn’t able to partake in most of these, it did give something for my husband to do while I rested.

12. We either docked or tendered in the centre of most of the towns we stopped at. This reduced walking distances and allowed some very limited investigations of where we stopped.

13. The ship provided excursions that were ‘low activity’ – most of these however were still quite long – 2 – 4 hours.

Cons

1. Although I requested a cabin close to the lifts, I hadn’t really considered just how far I would have to walk to go from one end of the ship to the other. This meant that from leaving my stateroom to going to the dining room and back, I would have to walk about 0.25 mile. This had to be done several times a day. Consequently, I went seriously over my step and distance allowance everyday. It was only because I rested as often as I could, used room service and used the spa that I had only one very serious collapse. In hindsight, I should have asked for a room midship – this at least would have reduced my walking distance slightly.

2. We had chosen a cruise that mainly went to small towns quite deliberately – this enabled me to be able at least to see the town from the ship. The reality was however that I was doing so much walking around the ship, I wasn’t really able to do much walking around the town. This was a real shame as some of the places we visited were just so beautiful.

3. Excursions provided by the ship were often very long and often quite expensive. While you could choose excursions with a limited amount of walking, there weren’t many that were very short! We only chose two excursions and both were over 4 hours long. By the time we got back from the first, I was in a very bad state, very very close to collapse. I still consider it worthwhile however as I wouldn’t have been able to experience the stunning scenery of Norway without it.

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Our second excursion was on a Super 4×4 Jeep in Iceland. Oddly, although it was very long, my body didn’t react against it – that could of course have been down to adrenalin.

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Excursions therefore were all about trying to balance the advantages and disadvantages.

4. We booked an inside cabin because it was cheaper. In hindsight, we absolutely should have booked a balcony. This would have enabled me to sit somewhere quiet and private and watch the world go by. It would have made eating in the stateroom very comfortable and therefore not something I did just because I didn’t feel well. Eating more in the cabin would have enabled me to walk less.

So will I go on holiday with M.E. again – you betcha! In fact, we have already arranged a weekend away in Wales at the end of August. This time however I think I will be a little more cautious about what I do. I think I will listen to my body more but also listen to it with a touch of suspicion. I will be keeping a firm eye out for adrenalin telling me all is okay. Allowing my bubble to be slightly expanded by adrenalin every now and again is no bad thing, I will just need to ensure it thoroughly deflates to its normal size before I try expanding it again.

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A Man Shaped Print in the Wall

Today’s blog is slightly different from normal. Having M.E. has made me more empathetic and understanding of the suffering of others with debilitating illnesses. This blog is aimed at raising awareness of just one of these.

A very close friend of mine works in a university in London. Part of her job is to project manage the upward extension of the Physics Department. By that I mean they are taking off the roof of the building and adding more floors. After removing some wall panels on the top floor, the builders discovered a man shaped print on the insulation. It was clear that a builder, probably back in the 1960s when the building was built, took a running leap against the wall. We can only assume it was something fun to do after a long day of work.

Initially, the idea of a man leaving such a print was really quite funny. When she told me I could just imagine the scenario – the man throwing aside his hard hat with a yelp of, “Come on guys, watch this!” taking a running leap at the wall, splaying out his hands and legs as he makes contact. Afterwards all the guys laugh at the craziness of their colleague. If it had been in the days of mobile phones no doubt videos would have been taken and spread throughout the internet via Facebook or the like.

It was only when my friend followed up with the fact that the indent had actually been made into Asbestos that the laughing stopped and the horrifying truth of the situation dawned. We stopped and wondered whether this gung-ho builder is still alive today. How long did it take him to realise he was sick? How long did it take him to die? Did he die after his children grew up or did he leave small children behind wondering what had happened to daddy? Did he ever realise himself that it was that one foolish leap that had precipitated his death? Has he succumbed yet to the cancer that may well yet ravish his life should he still be living today? Questions clearly that must go unanswered. We can not say whether this man is living or dead.

Until recently I had only vaguely heard of the cancer – Mesothelioma. I knew that it was primarily caused by exposure to Asbestos but I didn’t really understand just how serious this illness is. I was contacted recently by the husband of a woman who was a one in a million survivor of Mesothelioma as a consequence of Asbestos exposure. Through him I have learnt about the true nature of this disease.

For most of us we only realise to just what extent we are surrounded by Asbestos when our place of work or education is being refurbished – the building area is sealed off by men in alien suits. A few days later building work continues as normal and you think no more of it. Asbestos however is to be found in most buildings dating from before the 1980s or so. It was only then the true reality about just how dangerous Asbestos is led to changes in building habits although not necessarily regulations.

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While most forms of Asbestos are now banned in the European Union, it is still legal in the US. In both the UK and the US on average 3000 people a year have their lives torn apart by a diagnosis of Mesothelioma. Both countries see these numbers rise year on year.

For me I also didn’t realise that the most minute quantity of Asbestos can cause this disease, as indeed can secondary exposure when you touch material that has Asbestos fibres on them. Years, if not even decades can pass before you begin to show signs of this illness. On diagnosis most specialists will give you only about 10 months to live. 10 months to sort out all those things you had dreamed of for the future. 10 months to say your goodbyes. 10 months to make sure your children will be financially secure for their future.

Some do beat the diagnosis as the wife of the man I have been conversing with did. These people are rare, very rare, they are the extremely lucky ones. What gets me though given I have a disease that I could have done nothing to prevent getting, is that Mesothelioma is 100% preventable. I would have given anything to prevent myself from getting M.E. There is no part of me that wants to have my life on hold. There is no part of me that wants to not be able to dream of my future. There is not one part of me that likes feeling exhausted and in pain day after day.

When I was therefore contacted by The Mesothelioma Cancer Alliance and asked to write a blog aiming to increase awareness of this disease and how it is 100% avoidable, I felt that if just one person avoided contacted with Asbestos as a consequence then this would be an incredible achievement.

Previously I may have been a little blasé about the dangers of minute amounts of Asbestos, I was sure it would have had to have been large quantities. Today however I know that being blasé in the schools I work in, the council offices I visit or the hospitals I attend could ultimately cost me my life.

To learn more about this illness visit Mesothelioma Cancer Alliance

To help raise awareness of mesothelioma and the risks of Asbestos exposure please share this blog by using one of the buttons below.

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