Hell Week

For those of you who don’t know Hell Week is a 5 ½ day period fairly early in US Navy SEAL training designed to whittle out the less determined, weaker candidates.  It comprises some of the most brutal physical and mental challenges in the US Military.  During this time potential SEALs experience intense physical pain, cold, exhaustion and have to survive on less than 4 hours sleep in total.  Generally, it is expected that 80% of the starting SEAL candidates will quit during Hell Week, but those that finish almost always go on to complete the rest of the course.  Why?  Because they feel invincible.  Because they pushed themselves further than they thought they could, came out the other side and now nothing can stop them.  Many SEAL Instructors say that it is not necessarily the physically strongest who pass but those with the greatest mental fortitude and determination.

 

I have always had an interest in the Special Forces ever since I was a young lad.  I remember seeing my Grandfather’s medals from the Second World War and just feeling so immensely proud of him.  I hoped that one day I would do something that would make others, and myself I guess, as proud of me.  If I could live my life again I would have joined the military, as I had always wanted to.  But I put others needs first and did what I thought I should do rather than what I wanted to do, and life ran away from me and the opportunity was lost.  Now I sit at home, for days at a time, and I wonder what might have been.  It is a horrible, sickening feeling to have put off what you always wanted to do because others convinced you that it was wrong or selfish, even though you knew it wasn’t, only to find that at the last moment when you thought you could make things right the door has been firmly slammed in your face.  I will never achieve my life’s ambition – I never even got to try.

 

So what had Hell Week got to do with anything anyway?  Well, a few weeks ago I had some tests because I was getting some chest pains.  My ECG came back normal but my blood showed deranged liver function.  My GP and I chatted about this and we thought it may have been because I had started Amitriptyline a few weeks earlier for pain relief.  As there was a little bit of urgency stopped the Amitriptyline immediately.  This was not a fun experience.  Amitriptyline withdrawal is awful, I barely slept for around two weeks and obviously lost the benefit of the pain relief it had been providing.

 

The following blood test showed no improvement so the next step was to stop all pain relief plus the supplements I was taking.  I had to ensure nothing entered my system for over a week to rule out drug-induced hepatitis.  At first, I didn’t think it was going to be that bad.  The first day without pain relief was definitely more uncomfortable than I was used to, but it was bearable.  However, in the following days, the pain just went to another level entirely.  I was in agony – nerve pain, aching joints, and burning twitching cramping muscles.  Intense nausea returned and my fatigue was off the charts.  I could hardly do anything.  Eating was exhausting.  Showering was out of the question, even cleaning my teeth took some serious effort.  And throughout all of this, I barely slept.

 

After a week went back to the Health Centre for another round of blood tests.  My GP was on holiday so one of her colleagues called me with the results.  She advised me that my bloods were worse than they were before.  She suggested that I stay off the pain medication for a further two weeks and repeat the blood test.  I felt as if I had been punched in the stomach.  I told her there was absolutely no way I could manage that, so she agreed that I can start taking my pain medication again.  What a relief, but it is not like a switch has been flicked and I feel better.  I am having to undo all the harm that week did to me.  My energy reserves were not just drained they were damaged and I am still so sore.  I feel as ill as I did when I was first diagnosed and getting to where I was prior to these tests, which wasn’t exactly amazing anyway, took me months.  Now I face the challenge of rebuilding my shattered body once again.

 

Whilst I may not have been rolling around in the north Pacific surf or carrying logs and dinghies over my head for hours at a time like the SEALs, I feel like I have completed my own Hell Week.  Here, though, there was no welcome into an elite brotherhood, no fanfare or congratulations.  No one will look at me in awe for surviving a week, in fact, 10 days, of exquisite pain and sleep deprivation, and no badge of honour will be pinned to my chest.

 

Speaking of honour, I have not earned a beret or coat of arms to prove my worth.  Nor do I have medals to evidence the hardships I’ve faced or even the respect of my peers.  But I do have pride in that I have coped and yet I feel further withdrawn from society.  I guess in some ways the same way Special Forces operatives have pride in what they have achieved but can’t tell anyone due to it being classified.  Whereas I can tell people but they don’t understand.  If I’d said I have had a bad reaction to chemotherapy everyone would get that, but to say I had a bad M.E. flare up there simply isn’t the recognition in my community or this society that they fully, or even begin to comprehend what that means.  This has to change, I am going to do something about this, I simply can’t put up with it any longer.

Superhuman?

I don’t know about you but since I became ill and subsequently assessed as having a disability, I have felt this strange sense of social expectancy being placed upon me. I feel that I must conform or oddly even to perform.  I think in some ways it comes from being bombarded with images and stories of people who have “overcome their disability” and achieved amazing things.  I am not saying this is a bad thing, achievements should be recognised and I am all for raising awareness and funds for worthy causes.  I also want to be clear, in no way am I criticising the amazing people who achieve incredible feats whilst living with a disability.  But I worry that society expects that if people with ME/CFS, or any other invisible disability for that matter, just dug a bit deeper, if they put in a bit more effort they would find they can overcome their illness.  Or worse still, that you aren’t really considered disabled unless you have proved you can overcome it through some herculean endurance feat or by raising millions for charity.

 

Before I became ill I was reasonably fit.  I used to run, cycle, cross-train and rock climb.  I can safely say that I get far, far more tired now from going for a short walk than I ever did from spending a day in the hills or after a long distance run or cycle.  But strangely, as a disabled person, I feel that I am a fraud.  Not because I am faking an illness, I’m not just for the record, but because I feel that I should have not let it beat me and that I should be able to do something amazing in spite of having M.E.

 

In a lot of ways, I feel there is a general perception that some disabilities are seen as more “worthy” than others.  Almost as if you should aspire to be disabled or ill enough for people to notice but not so disabled you can’t do something that many able-bodied people would see as impressive.  For example, if I went for a swim just now, I would probably manage a length before I was absolutely ruined.  I’m sure many other swimmers or spectators would draw the conclusion that I was either catastrophically unfit or pathologically lazy.  Neither is pleasant and puts me off going, to be honest.  But if, say, a double amputee is in the pool at the same time then they are given respect and admiration or at the very least acceptance.  I am not saying others with disabilities don’t deserve respect, of course they do.  I just want to know why it is so hard to come by for people with M.E.

 

The simple answer seems to be the massive lack of awareness about invisible illnesses and the impact they have on people and families.  We live in a consumer culture that gets our information, ideas and stereotypes from TV and the internet and we gather these in a hurry.  The attitude prevails that if what I am interested in is not available to me via a quick Google with a response of no more than five sentences or a 20-second video then it is not worth knowing about.  And there, I feel, lies the problem.  M.E. is so complex, so misunderstood and there are so many conflicting opinions it would someone without direct experience of the illness an age to understand it.  I’m pretty sure if I introduced myself to a stranger and said that I was disabled their first thought would be where’s my wheelchair and the second would be had I considered entering the Para-Olympics.

 

For the avoidance of doubt and for those who think that people who have M.E. have given up or are lazy, let me assure you that we are not.  Answering the phone is overcoming our disability, so is making a meal, so is having a shower or getting dressed and for that matter so is staying in bed when we need to rest.  Holding down a job is akin to a gold medal-winning performance and looking after a family and home is worthy of an investiture form the Queen.  If you don’t know what we are going through you have absolutely no right whatsoever to judge.  If you want to know, ask me or anyone else with M.E., we will happily tell you.  And then you will see who is overcoming their disability.

Isolation

I don’t want to say that having ME/CFS is exciting – it isn’t.  But during the process of being diagnosed and finding the best course of treatment that suited me, there is quite a lot going on.  Since the start of the year, I have established a great relationship with my GP who is so supportive and understands me and ME/CFS with such clarity and empathy.  My medication, although not entirely sorted, is getting there and I am more comfortable than I have been previously.  I have been discharged from Physio as I found my baseline activity level from which I can pace myself.  I have spoken to a Counsellor on the advice of my work Occupational Health Department and they are content I am as in as good a state of mind as I can be given the circumstances.  I have applied for all the benefits and help I can.  I have explored complementary and herbal remedies and I have adapted my home and surroundings as best as I can for the time being.

 

And then it hit me.  That’s it.  There is nothing left to do.  I am fighting this, living with it, from now on, on my own.  I have exhausted all options open to me and all that is left is to get on with it.  Upon realising this I was struck, taken aback even, by how isolated I felt.  Doubts sprang into my mind.  Will I get better?  What if I don’t?  What will this mean if we have a family?  Can I provide an income?  Will I be of any use to anyone?

 

Because there is so little funding for, and awareness of, ME/CFS there is little data to analyse from which to draw conclusions.  My GP says my prognosis is good, I am young enough that my ME/CFS is unlikely to last forever.  Yet reading material online from respected sources suggests full recovery from ME/CFS is around 5%.  Perhaps I will be one of the 5%.  Perhaps 5% isn’t even accurate.  The frustrating thing is nobody really seems to know.  I am so used to googling a question I am not sure of the answer and finding it within seconds.  But this won’t work for me now, because the answer isn’t there.

 

Throughout this illness I have seen others’ lives, careers and endeavours continue while I have been caught in a time warp.  But I did not expect the same to happen with my healthcare, and it has caught me completely by surprise.  I felt as though I was cut adrift, and now I’m inescapably being dragged away from shore and safety by a current of uncertainty.  If I look into the waters surrounding me all I see is the dark, cold abyss of helplessness.  I recoil in fear of falling overboard all the while clinging tighter to whatever is at hand and longing to be back onshore.  Looking around I see these chaotic waters break on the reefs of pain and exhaustion, and yet my focus must remain on navigating past them in search of a better understanding of my body, my mind and this illness.

 

So where do I go from here?  Is all lost?  Perhaps being cut adrift is not an accurate way to look at my circumstances.  What if I said that I have been provided with all the tools available to make a success of living with ME/CFS?  I have been given all the help I can get and it is time, to use another metaphor, to take the stabilisers off my bike and cycle this path on my own.

 

Actually, when I think about it I am not on my own at all.  If I was (and can be) selfish then all I would do is look ahead – the future is uncertain, and so there isn’t much to see which makes it scary.  However, if I look to my side I see others with ME/CFS who have the same, or greater struggles.  I can help them and they can help me.  For instance, just writing this blog helps me and have been fortunate enough to receive many messages of support from those who have been helped by my writing for which I am so, so grateful.  When I look behind me I see my family and my friends willing me on, wishing they could share the burden and doing all they can to ease my path whilst offering encouragement.

 

So I am not isolated at all but if I am careless, if I only look to myself and my needs then I will be, or at least I will certainly feel that I am alone.  Instead, I will look to others for strength and offer what support I can in return.  I will cry out when I feel lost but when I find my way I will guide those who are left stumbling in the dark.  We, all of us who have ME/CFS are in this together, and together we will find our own way.

Returning to Work

In the last few weeks, I have started my phased return to work.  So far things have gone well; I work from home, just a few hours a week as and when I can and I have no targets or goals dictating what I do.  As work environments go this is very gentle and I feel extremely lucky to have had such support from my supervisors.  In time I will move back to an office and slowly increase my hours and workload.

 

I have to say in the weeks leading up to starting back at work I was quite apprehensive.  Not so much that I would be overwhelmed but more that I would feel useless; like a spare part or a shadow of my former self.  Certainly, if I had returned to work six months ago I would have, without a doubt, been very frustrated with myself.  Not being able to do routine tasks I had previously found so simple would have weighed heavily on my mind and I would have, inevitably, allowed feelings of hopelessness, jealousy and self-pity dominate my thoughts.

 

But I feel that my outlook has changed.  I never used to have much self-confidence when I was younger and I looked, even clung, to others, particularly those whom I wanted to model my life or career on, yearning for positive feedback.  I fell into the trap of believing that if I was better at my job than my peers then that was validation that I was a good person and therefore I would be happy.  Or that if I had expensive possessions then that meant others would think I had a good job or was successful and therefore I would be happy because I assumed other people would assume I was happy.  If you can follow that, is that not just ridiculous?

 

And along came ME/CFS, which has been a great leveller.  It has taught me that there are far, far more important things in life than a job title or a career or even accumulating possessions.  Keeping as healthy as I can, seeing friends and family and appreciating what I have is far more rewarding than pining or striving for something that, ultimately, I have no control over whether I succeed at or not.  Today, I face challenges that are far greater than anything I have faced at work and I am beating them, or at least I am not letting them get the better of me.  Yes, I get frustrated, yes I have regrets about missed opportunities and yes this illness grinds me down – I wouldn’t be human if it didn’t.  But I see things differently now, I have different values and I have different needs than I did prior to becoming ill.  I have learned that success and self-worth is entirely a matter of perspective.  I control my perspective and you control yours – don’t let anyone tell you different.  I choose to be a success because every morning I wake up and I struggle through my day with all the pain, exhaustion, nausea, confusion and isolation that it brings, and when it’s over I go to bed knowing I will do it all again the next day.  I shall not be defeated.

 

This is why I feel so different about my work, at the moment I am doing nothing other than answering emails and some simple online training packages.  Before I was ill this would have been torture, but I am loving it.  Do you know why?  Because in spite of having ME/CFS I am doing it.  It may well be all I can do, but I am doing it.

 

ME/CFS takes so much away from us but it has given me a new perspective on me and my life, and for that, weirdly, I am grateful.

Understanding Fatigue

There are lots of great metaphors and models for explaining fatigue to people who don’t know much about ME/CFS.  Fatigue is very different from being tired.  One can recover from tiredness fairly quickly or receive a boost from a coffee or even fresh air.  Fatigue is more prolonged, it remains despite efforts to revive yourself and, certainly for people with ME/CFS it remains no matter how much sleep you get.  Probably the most famous is the Spoon Theory which I like a lot.  When explaining my fatigue to my nine-year-old son, I used a model I found online about a computer game character whose energy bar is reduced by doing tasks and only regenerates, slowly, with complete rest. This made a lot of sense to him.

 

I have thought a lot about how to explain fatigue to my family and friends.  The best way, that I can come up with, is to imagine that I am a smartphone and not a very good one!  Unfortunately, the battery usage in this smartphone has been damaged, either by a virus or by being dropped it doesn’t really matter the main thing is it is not as effective as it used to be.

 

On this smartphone, as with every smartphone, are a number of apps.  Each of these apps performs different tasks and, as such, drain the battery at different rates.  If too many apps are used too often the battery will drain quickly and the phone will go into standby mode until it is recharged.

 

However, because the battery is damaged it will never fully charge, no matter how long it is connected to the charger and compared to other phones, there is only ever a relatively small amount of battery life available.  In addition, using an app while the phone is connected to the charger will drain the battery faster than it can be charged.

 

So, in order for the smartphone to work one would have to make sure not too many apps are used too often, and that there are ample opportunities to charge the phone throughout the day making sure the phone is not used whilst charging.

 

Does this make sense?

Shopping

How anyone can enjoy shopping is beyond me!  I was never a big fan of it before I became ill; spending hours wandering around looking at stuff that I wasn’t really interested in just didn’t do it for me.  But now it is torture; shops, supermarkets, in particular, are such hostile environments.

 

Firstly, there is the matter of getting there and finding parking.  I am very fortunate to have a blue badge so I can use disabled parking, however, more often than not all the spaces are taken so inevitably that means parking in the normal spaces.  Which for some reason are ridiculously tiny.  Unless you park exactly in the middle of the space and the cars next to you have done the same it is really difficult to get out of the car, even for an able-bodied person.

 

For the most part, I take my walking stick with me whenever I go out of the house but this also causes problems.  Carrying a basket and using a walking stick means I have no free hand to pick up items.  I also can never remember any of the items I need to rely on a list or my phone – both, again, require a free hand.  So, I run the gauntlet of leaving my stick in the car and grabbing a trolley before I get too wobbly.

 

Once I have successfully escaped my vehicle the next challenge is the onslaught on my senses as I enter the store:  The bright white artificial light is dazzling, the noise from people moving, talking and music playing is deafening and the constant movement of so many people and trolleys going in all different directions is unsettling and sometimes nauseating.  For most people popping to the shops is a very small part of their day, perhaps even a minor inconvenience.  For me, it is an expedition.  The next time you are in a supermarket just pause for a moment, tune into each of your senses one at a time and you will be amazed at how much is going on.

 

The sound is cacophonous:  There is usually music playing, tannoy announcements, tills beeping, footsteps, people talking, trollies squeaking, even items being moved adds to the general melee of noise.    If you take a look around when you next shop, you’ll see all manner of colours, packaging and displays that are designed to attract your attention.  These same displays shout at me, colours mix and swirl, they leap out as I pass them causing me to back away.   The temperature changes when coming in from the cold, walking under a heater and then into the chilled section play havoc with my body.  People with ME/CFS are very sensitive to temperature and find it hard to regulate their own body temperature, so walking through different temperature zones is not the most fun we can have.  Even my smell and taste are attacked.  There are so many smells in a supermarket and not just from the stock.  The air is saturated with different perfumes, or Lynx if you make the mistake of shopping during the school lunch break!

 

My brain fog prevents me from planning meals so unless I know exactly what to get when I come in, I just wander about with my trolley looking at things not really knowing what I would do with them.  After a few minutes, the muscles in my eyes fatigue and the world slips out of focus.  I feel light headed and my brain starts to shut down as if overloaded by my senses and requiring a reboot.  It is time to go.  I struggle through the checkout whilst managing to remain upright and exchange pleasantries with the checkout staff.  Finally, I exit the store before shoe-horning myself back through my car door and into the refuge of my seat.  I close the door and take a good few minutes to breathe.  It’s quieter in there and I take time to recover a bit of energy before setting off on the short drive home.

 

Arriving home feels like returning from a long camping trip or a foreign holiday that had an antisocial flight time.  I retreat to somewhere quiet and warm to decompress.  I let my mind process all it has had to deal with, all the while hoping I haven’t forgotten anything and don’t have to return to the shops any time soon.

What Have I Become?

I began this process in an attempt to try and understand how I have and will adapt to having ME/CFS. But somehow along the way, I feel that I may have lost myself as well. Part of the catalyst of this realisation is that arrangements have started for a school reunion next year. And whilst I am very much looking forward to seeing old friends and catching up with those I have lost touch with, one part of it is terrifying me.

We, in western culture, are defined by what we do, some may say by what we have but I don’t want to entertain that rather distasteful perspective. So that leaves me with the question – who am I? Although I am technically still employed I don’t actually do any work just now. I don’t have a job title or a position to fill. I used to be active and had a number of hobbies but I can’t do any of them now. Does this mean I am just a person with an illness, with a disability? Is that all I amount to? I hope not but I am struggling to find evidence to the contrary, at least in the same context that others judge achievement, success, and identity.

Inevitably the questions will come up; what do you do for a living? What interests do you have? What hobbies do you enjoy? What have you done since you were at school? Pretty much the answer to the above questions is “nothing”. So what do I do? What do we, people with ME/CFS, have to do to show the world that we amount to more than just being the host of a debilitating illness? That our experiences, even though they are within four walls, or in a bed, are no less valuable than those who are fortunate enough to have careers, hobbies and are living life to the fullest.

I have spoken before about how I wish I had a sign or a t-shirt that read “I have ME/CFS, don’t judge my achievements by your standards!” but unfortunately I don’t. And the situation is not helped by ME/CFS being an invisible illness to the vast majority of society. ME/CFS will take your hopes, aspirations, achievements, freedom, joy, pleasure, friendships, relationships, clarity of thought and credibility. In return, you get pain, exhaustion, loneliness, worthlessness, isolation, disbelief, confusion and loss.

But all is not lost. I am determined for that to be the case. I refuse to accept that this illness, this disability devalues me as a person. Although I can’t contribute much I feel that I now have a far better understanding of what people with chronic illness and disability have to go through on a daily basis. Almost all of which is not seen or ignored by so many. I am grateful to now be part of the ME/CFS community. This is a thriving virtual world where those with ME/CFS and their families and carers, who prior to social media and increased connectivity they would have been isolated, can meet, discuss, rage, complain, laugh, cry, celebrate and support each other.

Having ME/CFS leaves you in a dark place in a darker, frightening world. The only remedy to darkness is light, and light, in this case, comes from knowledge, awareness, and empathy. If you have ME/CFS, if you know me, if you read this blog or if you know someone with ME/CFS, talk about it. Learn about it and share your knowledge and your experiences with it and the people who have it. Only then will those of us who have it and those who care for us will feel recognised and included.

I would love to have a conversation where if someone asks what I do I can say, without fear of shame or judgement, that I have ME/CFS. To which their reply would be “oh that’s that seriously debilitating, life-changing, critically underfunded, poorly treated illness. I’ve heard about that, you are doing well to meet me, I appreciate it.” Rather than the usual, “what’s that then?”