To My Wife

I know that this is not what you expected for our first year of marriage. I guess neither of us really expected the “in sickness and in health” part to be quite so one-sided. And it is fair to say this has not been an easy time for either of us; we have faced more than our fair share of obstacles. But through it all, I am mindful of how fortunate I am to be with you, and I want you to know how much I appreciate all that you do for me. I’m not great with my words, the brain-fog means I lose track of what I want to say and I often can’t find the right words. Being able to write them down helps and it allows me to share this with the world so everyone will know how wonderful and kind you are to me.

I am so grateful for all you do for me, with no complaint or resentment: driving me all over the country to appointments, doing the cooking, tidying up, and walking the dog. But the little things mean just as much: you bringing me a blanket on a cold day, stroking my hair as I fall asleep, holding me in your arms gently so it doesn’t hurt, reassuring me when I am anxious and reminding me not to take life, or myself, too seriously.

To be able to bring laughter to someone in pain is a gift, and to make someone who is lost feel loved is the sign of the warmest of hearts. You have both in abundance. I’m sorry that I have so little to offer you in return. You encourage and strengthen me, you hold me and guide me. Although our walk through life together is slower than we’d planned I still treasure all the days you are by my side and I can take your hand in mine. I often wonder, one day, when this is behind us if I will be able to repay you for all you have done for me. And yet this would be more for my benefit, not yours. As it is, you are not looking for payment or recognition, the thought of it most likely offends you. You act out of love and you love unconditionally. As your husband, I can ask nothing more of you, and as my wife, you can expect nothing less from me.

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Tiredness

Recently I was asked once again why I was off work. When I mentioned I had ME/CFS the response I received was “is that just being tired?” I was a little taken aback, but I began to think – the answer is both yes and no. I am tired, as is everyone with ME/CFS. My ME/CFS is moderate, very occasionally severe, and this means, asides from many other symptoms, I feel tired almost all of the time.

 
But it isn’t your normal kind of tiredness. I have worked shifts for most of my adult life so I understand the effects of sleep deprivation. This is something else. The best way I can describe it is a similar feeling to when you have been out on the town and you have had too much to drink. Imagine is about 4am, you are drunk and have sat down somewhere nice and warm. That feeling of your body aching to fall asleep, a feeling that overwhelms you, that is what it is like. A lot of times when you just can’t fight it anymore you fall asleep so fast, almost as if you are passing out. No wonder we have cognitive difficulties when we are barely conscious!

 
The other aspect of tiredness is sleep. I can sleep for ages but I have terrible dreams and I never wake up refreshed or relaxed. The other day I dreamt I was in a serious car accident, not long ago I was living in Tudor times and had my head cut off, I’ve been chased through my house by giant spiders. For the most part, my dreams involve me coming to a violent death or being chased by something particularly nasty.

 
I don’t know if you have ever woken up suddenly from a deep sleep and found that your body is weak, that you have no muscle tone and simple things like making a fist is difficult. It’s as if your muscles won’t do as they are supposed to, like the messages from your brain to the muscles aren’t quite getting through. I have this sensation a lot but instead of lasting for a few moments it remains throughout the day.

 
Yet another factor in tiredness is insomnia, or for many of us painsomnia. Try as I might, there are some nights when I am just too sore to sleep. Other times my mind races, contemplating “what ifs” and permutations that I have no influence over. I try to remain grounded – what are the facts, what can I influence or do, what is just nonsense and the product of anxiety.

 

The irony is not lost on me that a disease that makes you need rest, and lots of it, won’t allow you to have any and will torment you as you do.

Diet

I am sure I am not alone when I say I have read so, so much about diet since I was diagnosed. The amount of information and advice is a little bewildering. I want to say first of all I am not advocating one diet or another, I have no expertise in this field whatsoever. All I am doing is sharing what has worked for me so far.

 
When I saw my Consultant he recommended that I go gluten-free to help relieve my symptoms, particularly fatigue and stomach discomfort. I have followed his advice but to be honest, I didn’t find any reduction in my symptoms other than my stomach was less uncomfortable, I definitely notice more discomfort if I inadvertently eat gluten now.

 
In the following weeks, I met a good friend who is an independent dietician and a very good one! We spoke at length about my symptoms and she recommended following a low FODMAP diet. The idea being that these foods promote a healthy gut which leads to less irritation and inflammation and thus a reduced response from the body and therefore less ME/CFS-type symptoms. I am not 100% low FODMAP but I am fairly close and it seems to help with stabilising my energy levels.

 
I was also recommended the anti-candida diet which seems to do a similar thing but perhaps is more restrictive. I have cut out processed food almost entirely focussing on organic and fresh food wherever possible. I used to rely on caffeine to get me through the day and had a pretty serious coffee habit! However, I developed prostatitis and was referred to a Urologist. As part of my treatment, he strongly advised cutting out all caffeine – no tea, coffee or fizzy drinks. This has helped me a lot as my energy levels, although still low, are more even with fewer peaks and troughs.

 
One of my neighbours is training to be an Herbalist and has a vast knowledge of ME/CFS. She recommended that I try a tea made from cleavers, also known as clivers or sticky-weed. I was a little sceptical at first, and I don’t mind saying very nervous that it would taste utterly disgusting! But I have been pleasantly surprised and I can feel the benefit of taking it. The tea helps to cleanse the lymphatic system, to help the body get rid of toxins. It isn’t a magic bullet, if it cured ME/CFS it would have been discovered long ago but it does help.

 
My last great obstacle is refined sugar. I am really struggling to cut this out. I just crave the energy boost and when you are exhausted most of the time the cravings are almost constant. I think my weight is suffering because of it and I need to be more disciplined, perhaps replacing some carbs with protein would help too.

 
When you have days filled with very little, what once was mundane before now takes on new significance. For me, having some toast is a big deal and I absolutely love it! But I have to be careful not to see food other than what it is – a necessity for me to survive. It is not a reward for doing something, nor is it a remedy for boredom. That doesn’t mean I can’t enjoy what I eat, of course I can. I just have to eat the right food for the right reasons.

Boredom

Inevitably when you have a chronic illness you get bored.  I get bored.  I hate being bored.  Part of starting my blog was so I would have something to do and something to think about!

You have to be so careful when you are bored, it is very easy to get trapped in negative spirals of thinking.  Being in the Police I quickly learned how to deal with being bored.  I don’t mean that disrespectfully or unprofessionally, but if, say, you are stuck in a field by yourself guarding a crime scene for 8, 10 or 12 hours you are going to get bored.  I found that if you fight against boredom if you allow it to distress you, it only makes it worse.  Acceptance was a big part of how I dealt with boredom; I would acknowledge I was bored and move on, allowing my mind to wander.  Generally, I would make plans for my time off or relive fun experiences.  In my mind I’d remove myself from my current circumstances.

The same tactics don’t work now, unfortunately.  Being in constant pain means it is hard to let my mind drift away, any movement can cause a sudden twinge and I am hauled back to reality.  Making plans or reliving fun times, which was once fun is now distressing.  I am reminded of loss and what has become of my life with no guarantee that it will return to how it once was.  I long to be free from this, to walk, to run, to sit outside for longer than 2 minutes, to dance with my wife, to play chasing with my son, to stand on top of a mountain and see a distant horizon, to see further than the internal walls of my house, just to be free.

Boredom now is more than boredom, it is a reminder of the impact this illness has on me and those close to me.

But I won’t let this situation persist, mainly because it is too uncomfortable.  So I have changed my focus.  I now spend my time thinking about how I can make life better for others and myself.  Every so often I discover a little gem of information that helps me along the way.  For instance, this evening I learned that resilience is not a personality trait but has more to do with your interaction with your friends, family, peers, community, and environment.  By interacting, even just a little, this gives you purpose, means you have value and occupies your mind.  My main interaction with the outside world is through social media.  I have been amazed at how active and vocal the ME/CFS community is.  There is a wealth of information and support flying around social media.

In May my wife and I were fortunate enough to be invited to a Parliamentary Reception at the Scottish Government focussing on ME/CFS.  We listened to and met some inspirational people, all of whom are dedicated to bettering the lives of those with ME/CFS and those who care for them.  I also hear some utterly harrowing tales of the treatment children and adults that had been forced to endure, some of which has now been discredited but is still recommended in many health boards, and the devastating permanent effect it has had on them.

Yes my boredom is a burden and some days it does, on occasion, make me miserable, as it would for anyone.  But I try to view it as a symptom of this illness rather than a consequence of it.  This gives me hope and a more positive outlook because I have and can take steps to alleviate some of my symptoms.  I think perhaps how I coped with boredom before is that I knew when I was bored it would, in fairly short order, come to an end.  The difference is now there is not necessarily an end in sight, nor is there a means that I can control that alleviates the tedium of being chronically ill.   However, this, and most things in life, can be reframed by changing your reference point.  I like to explore new possibilities in my mind; could I start a charity?  Can I do some very gentle yoga? Should I write a blog?!  These are all things that I consider and exploring them brings me relief.

This is one of my favourite things to think about:  There are roughly 250,000 people in the UK with ME/CFS.  All of whom experience similar symptoms to a greater or lesser degree.  Not all receive the same treatment, some receive none, not all receive benefits or help – many receive none.  A significant number face judgement and derision from their communities, peers, friends, families, and professionals.  Now just suppose that all of that 250,000 plus their carer’s, families and friends who understand the condition, sympathetic professionals and opinion makers, which could perhaps easily number over a million people, could come together.  If we could raise our voices in unison, in one place, so that we have to be heard.  To say unequivocally that we have gone through enough. That we think an annual budget of less than £1 per ME/CFS patient is an absolute disgrace, a scandal in fact.  That we desperately need more than one ME/CFS nurse for the entire country (as it is in Scotland), and that we are sick to our stomachs of being refused what should be ours by right because those who assess us don’t believe the condition exists and that their targets are more important than our wellbeing.  That we matter and our suffering is no less because there isn’t a test sensitive enough yet that can identify our illness.

Millions Missing and ME Awareness were brilliant campaigns and the effort put in by all concerned was huge, but as with all campaigns they culminate before fading from the public conscious.  Imagine if we, a number of people equivalent to the entire population of Birmingham, can find a way to be heard consistently and cohesively heard then we will no longer be ignored and marginalised.  Just a thought…

PIP

A few months ago, on the advice of the Citizens Advice Bureau, I applied for Personal Independence Payment (PIP).  I think it is fair to say that it is not the easiest process to go through.  For those of you who are unfamiliar with the process, it begins with a phone to the DWP. This in itself doesn’t sound too bad but you are inevitably put on hold for absolute ages and by the time you speak to an advisor you are pretty shattered.

The DWP send out a large form for you to fill out asking questions on how your condition affects your ability to look after yourself and to move around.  The CAB offers a service where one of their staff or volunteers will write out your form for you.  I utilised this service which is free and thank goodness I did.  The process took about three hours and was utterly exhausting.  There is no way I would have been able to write out all the information required.  The pain in my hands would have been excruciating let alone the concentration required would have been too much for me.  Fortunately, I had been keeping some notes on my symptoms and what I can and can’t do which helped a lot when answering the questions.

I found it was very easy to fall into the trap of describing my symptoms in detail as opposed to how those symptoms stop me from doing everyday tasks.  I also thought some of the questions were a bit loaded:  One, in particular, asked about reading.  I, like many with ME/CFS, find reading very difficult due to the cognitive impairment caused by the illness, usually referred to as brain-fog.  So I answered the question accordingly but my evidence was disregarded because the question was actually about vision not the processing of written information, which is the commonly recognised definition of reading.

You are given four weeks to fill out and return the form. This is not a long period of time by the way especially if you wish to include additional evidence which you have to source.  Once you have sent off your form you generally have to have a face-to-face assessment with a health professional a few weeks later.  I requested a home visit as we live in a rural location and long journeys are often too much for me to cope with.

Within a fortnight I was seen by a nurse who came to our home.  She was very nice and said she had a good understanding of ME/CFS as one of her friends has it.  She asked me some further questions based on my application and gave me a gentle physical assessment.  I was very grateful that she was so nice and understanding as I had heard a few horror stories of symptoms being dismissed and incorrect information being recorded.

A few days later I contacted the DWP and requested a copy of the assessor’s report.  Now the DWP don’t tell you that you can request this but you can and you should.  From reading the report I had a good idea of what decision was going to be made as to what I would be entitled to.

Thankfully, for the most part, the assessor’s report was accurate and I was awarded the standard rate for care and mobility.

If there is anyone reading this who is in two minds as to whether they should apply for PIP I would recommend that you go for it.  I would also say that you use all the services that are available and there are some excellent support groups on social media that have a vast amount of very useful information.

Finally, and this sounds a bit harsh but it is important to remember:  The DWP does not care how you feel, how much pain you are in or how awful your life is.  It only cares about what you can and can’t do mentally and physically.  I am no expert but there is a big difference between the following answers to the same question:

Question.

Can you cook a simple meal?

  1. No, because I am in so much pain all the time, cooking really aggravates the pain in my hands and joints. I find it hard to concentrate on anything so cooking is very difficult and I get so tired that things like cooking are just too much or me.  I find it hard to read cooking instructions and I have fallen asleep cooking food which has caused it to burn.
  2. No, because the pain in my hands prevents me from chopping food or lifting pans, in fact it is dangerous for me to attempt to in case I drop a sharp knife or pan of boiling water. Being so tired means I can’t stand for more than a few moments so working at a kitchen counter is impossible.  I can’t concentrate long enough to understand cooking instructions and because I am prone to falling asleep cooking food in the oven is a fire risk so I don’t do it.

In my opinion, there is a difference in the quality of evidence between the above answers with answer 2 offering specific evidence for what prevents the cooking of a simple meal.  Answer 1 is vaguer and as such, there is little to tie what has been said to why I can’t cook.  I hope this makes sense.

Let me wish those of you who are going to apply for PIP or are in the process of doing so all the very best of luck.  Don’t be disheartened by the size of the task, it can be broken down into chunks but equally don’t underestimate how much is to be done or how much it can take out of you.  And remember there is loads of support out there, you are not alone.

Weather

You may have noticed that I have taken a couple of months off from writing this blog.  My apologies to anyone who has been following me, I hope to get back on track in the next little while.  It may surprise you to know that the main reason I took a break was to do with the weather.  The last couple of months have been superb weather-wise and it has had a noticeably positive impact on me.  There is no doubt that hot, dry weather significantly reduces my symptoms, and this is echoed in other autoimmune conditions such as Rheumatoid Arthritis where sufferers report a reduction in the severity of their symptoms when the weather or climate is better.

So why did the good weather and me feeling better stop me from writing?  Well, the truth is it didn’t.  But I took the opportunity to do some other activities, ones that I know I will not be able to do when the weather returns to normal for the north east of Scotland!

The thing about ME/CFS is that you are constantly faced with difficult choices.  A sacrifice of some kind is always required, whether is giving something up for something else or enduring pain, nausea and exhaustion to complete an activity.  In my case, if the sun is shining, humidity is low and air pressure high, then I don’t feel as sore or as tired as I do at other times.  However, my energy levels are not what they used to be and I have to choose what to expend my energy on.  Do I go outside and enjoy a short walk and then rest for the remainder of the day or do I stay inside and pace myself slowly through the day?  The answer recently has been the former – the opportunity to be warm outside in the sun was too good to miss.  This has meant I have had to forego other things, this blog being one of them.  But I don’t feel bad, I love to be outside, and having that taken from me has been very difficult for me so to have a prolonged sunny spell has been just great.

It has made me think more about our climate though and if there is anything I can do to mitigate the effect a cold, wet, temperate climate has on me and how I feel.  I am nervous about the autumn and winter but at least I know what I am dealing with now and I can be prepared.  I pushed through last winter, mainly because I was undiagnosed, and I crashed badly.  This year I will do things differently.  I am going to investigate if there are ways to reducing the impact of our climate on ME/CFS sufferer.  Perhaps use of a SAD light, or going to an infrared sauna will help.  We live in an old house which can get quite cold so potentially more insulation will help too.  I would love to hear from anyone who has some good tips for making ourselves more comfortable in the colder months.

I have heard of a few people with ME/CFS emigrating to warmer countries to alleviate their suffering. This is not an option for me nor many like me in this situation, for innumerable reasons – family, work, infirmity and money.

And yet there is comfort in knowing that when the weather is nice, or if we get the chance to go on holiday then I will have respite and relief.  I guess I have another reason to enjoy the nice weather, it makes me feel like my old self again.

Mixed Blessings

A couple of weeks ago I had a cold/flu virus and I was really suffering.  My body ached, I couldn’t tolerate the feeling of anything touching my skin and I hardly ate or drank for days.  In short it was just a horrible experience undoubtedly made worse by having ME/CFS and I was miserable.  But in the days after getting over the virus I had a spell of 3 days of feeling really quite good.  It was as if my immune system had reset itself and I felt like I had energy again.  My pain and muscle stiffness eased and I felt free for the first time in ages, like a weight had been lifted off me.  So much so that my wife and I spent a short time snorkelling in a local bay.

I love to snorkel.  We discovered it on our honeymoon, it feels like I am flying – gliding over the seabed.  It requires not a huge amount of effort to get a lot out of it, I will happily just float in the water and watch the sunlight make patterns on the sand or the seaweed gently wave back and forth.  I find it so peaceful and relaxing.  Unfortunately I am back to my “normal” state of being sore, tired, dizzy and nauseous but small spell when I felt ok was so precious, such a boost and perhaps something that may happen again.

In the days before I had felt so ill, I never anticipated that I would have been able to be in the sea and I began to wonder what other surprises ME/CFS has in store or what good has come from being ill. 

To rest is one of my new found skills.  I would say I am now a connoisseur of rest!  I have my favourite spot on the sofa in front of the wood stove, I arrange cushions behind my back and head and one under my knees, I wrap myself in a blanket, I turn the lights off and listen to some very gentle relaxation tracks through my noise-cancelling headphones.  If I can I drift away to somewhere there is no pain and invariably I fall asleep.  Prior to getting ill I had never properly rested before and it is great.  Best of all I have to do it, I won’t get better if I don’t so I can legitimately rest – how many people can say they can do this or would allow themselves time to rest?  When (if) I am better I will make sure I incorporate some proper rest into my daily life.

Perhaps above all ME/CFS has taught me to be patient with myself, something I have always struggled with.  I am very much an all or nothing person – things tend to be brilliant or terrible with not a huge amount in between.  So, as you can imagine, when I became ill I wrote myself off entirely; I was never going to ski or cycle again, I’d never achieved any of my goals, no one would want to know me etc.  But this is not true, of course, I can’t manage anything like as much as I could in the past but I can do what I can and that is enough.  While I was a tutor in the Police I only had one rule for the probationers that I worked with and that was no matter what they were doing they must always try their best.  That is all you can ask of anyone and just because my best now isn’t the same as it was doesn’t mean it is of any less value.

I remember a long time ago I spent some time with a gentleman who had been in the Special Forces and worked with a number of Government agencies both in the UK and abroad.  He told me of a time when he had injured his leg and had been sent to a hospice for rehabilitation.  Whilst there he spent his time doing physio and running up and down sand dunes to rebuild his muscle strength.  By his own admission, he didn’t find it hard because he was so unbelievably fit at the time.  But he was struck one day when he walked into a ward and saw a number of stroke patients trying to pick up cutlery and other everyday items. He stood and watched them as sweat poured from their brows, their muscles quivered and shook from the exertion and if they succeeded in bringing a spoon to their mouth the relief and joy they expressed was so overwhelming to the point it moved the gentleman (a Special Forces soldier remember) to tears. 

At that point he realised that it isn’t what you achieve in life that is important, it is the effort you put into your achievements that brings fulfilment. 

I have tried to live by these words since the day he told me this and I would say now they are more salient than ever.  We will not receive recognition for showering and getting dressed, there will be no ceremony for making that important stressful phone call and we will not receive any medals for braving the Doctors’ surgery or a supermarket.  But we know the effort it takes, we know the determination required to fight through the pain and fatigue and we will take satisfaction in that we have achieved. 

Social Media allows us to see into other peoples’ lives, I know the efforts others with chronic illness have to go to just to function every day and I want to say that I am deeply impressed.  We are all doing superbly well given our circumstances.  We deserve a collective pat on the back and to hold our heads high.  Others may not understand our situation but that is due to their ignorance rather than any omission on our part.  ME/CFS is a malevolent, insidious condition that tries to destroy every fabric our lives.  It seeks to bring us into the depths of despair, pain and suffering where we lose all hope and look to cast ourselves upon the scrapheap.  But this is nothing more than a symptom of the disease and it is a falsehood, do not allow yourself to be deceived.   And whilst some of us may never be free of it just by not giving up on ourselves means we have already won.