Loneliness

In the 2 years that I have been ill, I have experienced a fair bit of loneliness.  I want to be clear I don’t mean to sound ungrateful, I am far from ungrateful.  I am thankful I have a very supportive family and great friends who have helped me along the way.  My wife and my dog are with me and I am content in the knowledge that they are nearby. 

But every so often when I am alone when I would like to see or talk to a family member or a friend the reality hits me that I can’t and it crushes me.  Outside these walls, my friends and family are working, or catching up with their interests, or socialising and having fun, and I am stuck.  Stuck in my chair or my bed.  Stuck unable to read or concentrate on a TV show.  Stuck desperate to escape this torment, to outrun the fatigue, to tear my skin off and shake the burning and stabbing pains out of it, to scrape the aching from my bones and joints.

It is the helplessness that really gets me.  I feel powerless to do anything: I can’t go out, I can’t call someone, there is no one to come and visit, even if there was I am in no state to have a visitor.  The upshot is that I feel utterly pathetic and even more alone.  I remember visiting people through my work, people who clearly didn’t have much human contact.    People who want to tell you their life-story when you just want the briefest of details.  Over-disclosers we’d call them.  I understand your position now and I’m sorry.  I’m sorry for how you must have felt and I’m sorry I didn’t show you much patience.  

Helplessness is dangerous too.  In my experience people who feel trapped are prone to making rash decisions, their mood deteriorates and their perception of reality and their self-worth changes for the worse. 

They say social media is a great thing.  It has made keeping in touch so easy.  And yet for someone who has ME/CFS, someone for whom time has stood still, watching other peoples’ lives move on is so, so hard.  I hate myself for being jealous of others, but I am.  I don’t want people to stop enjoying themselves or trying new experiences, I just want to be with you too.  I want to be part of it.  I want my life back.

You know loneliness can be devastating.  Yet you don’t have to be a superhero or high up in politics to fix it.  This is a problem we can easily fix.  I guess this is a plea to all those who can.  If you know someone who is housebound or doesn’t get out much please, please get in touch with them.  You have no idea what a boost it will be for them, you will more than likely brighten their whole day just for them to know they are not forgotten.  Don’t be offended if you don’t get a reply straight away when you feel distraught to know you are valued can cause strong emotions, in a good way, but these emotions are tiring and need processing.  Rest assured, though, that even just a quick text, a short message, or the briefest of visits can make the toughest of days more bearable, can bring joy to those who suffer, and that is a gift one shouldn’t be hesitant in giving.

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Twist or Stick

For some time I have been debating with myself as to whether I should get a walking stick.  I guess a major part of it is that I don’t want to admit to myself that I need one and I also worry about the reaction of others – weirdly both positively and negatively.

My hips, legs, and feet get so sore from walking just a short distance or standing for any period of time.  I get a lot of sensory overloads which affect my balance.  If I am honest I am frightened that I am going to fall over in public and to have something to lean on I think will go a long way to giving me a bit more confidence if I am out of the house.

In the last couple of days, I bit the bullet and ordered a collapsible lightweight stick.  I tried to find one that isn’t too “old”, “invalid-like” or overt – not that easy I might add.  It arrived yesterday and as soon as I unpacked it and tried it out I knew I had made the right decision.  I immediately felt safer walking and more comfortable.  I would encourage anyone in similar circumstances to go for it – it sounds strange but I feel reassured by my stick like I have an old friend walking with me.

Tomorrow my son is playing football.  I love watching him play and he adores his football matches.  The only issue is standing outside for an hour or more is agony – sheer agony.  Not that I want him to know that and I wouldn’t miss it for the world.  But now I feel less trepidation about going knowing I can rely on my stick.  Of course, I will need my wife to get us there and to help me but I feel like I am somehow more independent, I feel a bit more empowered, no longer quite as imprisoned by this illness.

I am worried about what people will think, though.  No doubt it will draw the inevitable questions and I will have to explain the signs, symptoms, diagnosis, and prognosis of ME/CFS probably several times.  But, you know what, that is also a good thing.  The more people who are well informed the more that can be done to beat this illness.  So bring it on – my stick and I are ready or you!

Guilt

Those of us who have chronic illnesses have to carry a lot, but one of the hardest burdens we have to bear is guilt.  There is so much I feel guilty about: The amount my wife has to do for me, how little I can do for her, what I miss out on with my son, the experiences he won’t have, that I am not living up to my full potential – the list goes on and on.  Guilt doesn’t just turn up on its own either, it comes with emotions such anger, self-loathing, resentment, fear and despair just to name a few.  At times I am overwhelmed.  I feel like I am drowning. 

Guilt, and fear of guilt are powerful motivators.  Recently I was playing with my son.  I was so tired and sore, I really should have rested but I rationalised that my pain would be temporary but his memories would last much longer.  On that occasion I was right, however, the danger is that I set a precedent, I repeat this too often and cause myself significant harm.  I have to be more disciplined and to be prepared to disappoint others and myself.  I have to find a way to beat guilt or it is going to beat me.

Looking back on the last few months I see patterns emerging where guilt was a factor.  I knew what I should do and what I was capable of and yet all too often either I would push myself too far or I resented having to hold off doing something I loved.  Neither were good options and, if I am honest, I hated myself for being less of a man, less of a husband, colleague, friend, son, brother, and dad.  I would waste so much energy on beating myself up for doing, or not doing something, that I felt even worse.  The whole thing was a horrible, self-perpetuating circle of pain.

Earlier I mentioned that it felt like I was drowning.  I came fairly close to drowning several years ago.  I was cliff jumping with friends.  We were having a great time and my confidence was growing with each jump until I decided to go for the “big one”.  I leaped off the cliff but hit the water with my legs bent.  The impact smashed my knees into my chest winding me badly.  I was at least 3 metres underwater, had no air in my lungs and couldn’t move.  Eventually, I floated to the surface but being so winded I still couldn’t breathe, shout or move.  Thankfully one of the party saw I was in trouble, waded into the water, grabbed me and pulled me to safety.

I feel I need a similar response now.  I need that arm around me, to be guided to shore, to know I will be ok and that help, practical help, is at hand.  It stands to reason that if someone is drowning you need to rescue them.  Standing on the side shouting “you’ll be fine” or “it’s not as bad as you think” is of no use.  In fact, it makes things worse.  The same, I feel, is true of ME/CFS or any other chronic illness for that matter whether it is depression, Crone’s disease, diabetes or cancer.  In a lot of ways, I would argue the same for those experiencing grief too.  If you want to help you need to understand that person’s perspective, you need to get into the cold, dark water with them, hold them, reassure them and gently guide them out.

How then do I get someone to come into the water with me?  How can I let people know that this invisible illness is affecting me in a manner that they can’t see?  Well, I guess I need to shout for help, I need to explain what’s wrong and what can be done to rescue me.  Having enough air in my lungs isn’t the problem this time, I can shout no problem at all.  The challenge is overcoming fear, embarrassment, and shame.

I think a lot of guilt comes from me judging myself based on my standards before I became ill.  This is compounded by me feeling others don’t understand this condition and I feel that to be guilt free I have to change my perception and other peoples’.  The thing is I look pretty well most of the time, and we naturally take things at face value.  If I am out of the house it is because I feel reasonable. When I feel bad I hide away.  I am actually writing this in bed because I feel horrific today, but no one will see this.  I wear a medical bracelet (and I would encourage all those with ME/CFS to do likewise), not only does this bring peace of mind should anything happen but I feel it lets others see that despite what it seems I might not be ok.  Or at the very least explain why I walk like I’m drunk sometimes, or that I slur my words, or can’t remember what I am doing, or suddenly stop and grimace in pain.

In a lot of ways I wish I could wear a top or carry a sign detailing my symptoms so everyone could see what’s wrong and ease my feelings of guilt as their and my expectations of what I am capable of are reduced.  This, of course, is fantasy but I do have this platform open to me.

So here it is:  I feel pathetic a lot of the time.  I struggle to do things most people barely give a second thought to.  Going into a shop is a big deal.  Loud noises panic me and cause me pain.  Having a shower exhausts me.  Reading makes me nauseous.  I have constant pain all over my body.  I often get dressed sitting down and slowly.  I feel like I am going to fall over all the time.  I am scared to meet people, people I know well because I forget their names.  I am frightened my son will think I am dull, lazy and boring.  I am terrified my wife will see me as a burden.  I’m scared of waking up every night in pain.  I am sickened of being constantly tired.  I am so jealous that everyone else’s lives continue while mine is on hold indefinitely.  I am tired, so tired, of feeling the world doesn’t understand and I have to continually justify my position, a positon I did not want nor choose.

But things will change and I can make things change.  Just writing and publishing this is a force for change.  Challenging ignorance will make all our lives easier.  Everyone has their own burdens which they can share if they wish and if they were received with compassion, empathy and understanding the world will be a better place.

From now on I will go easy on myself, I will be honest with myself and those around me.  As my wife recently said, and I love this, “sometimes making hay while the sun shines involves sitting patiently waiting for the grass to dry.”

I am not a person who has ME/CFS who should be doing better.  I am doing my best despite having ME/CFS. 

“Significant Cognitive Impairment”

This is what a Doctor in my Occupational Health Department wrote when detailing part of my symptoms and why I am not currently for work.  I find it slightly amusing.  I think my wife would argue I had this long before I got sick!

Brain-fog is such a pain sometimes and it affects more of what I do than I realised.  Normal conversations are hard because I forget what we are talking about just moments earlier, I can’t plan journeys to new places or adjust timings, following a recipe is almost impossible, counting change is like sitting an exam and talking on the phone is, well, embarrassing really, I keep zoning out and having to apologise.

Looking back I think I was experiencing some form of brain-fog prior to getting full-blown ME/CFS symptoms.  I recall particularly struggling to remember peoples’ names.  And it wouldn’t just be people I didn’t know that well it was people I’d been friends with for years.  Or famous film, T.V. or sports stars.  People I knew a lot about, who were instantly recognisable to me but I simply could not remember their names.  It was quite concerning and very frustrating.  At the time I put it down to sleep deprivation from shift-work but now I am not so sure.  I wonder if it was the early signs of this illness and I wonder if others have had similar experiences.  I’m sure, in time, as awareness increases and research budgets grow we may find an answer.

I have tried a few tactics to reduce the effects of brain-fog.  I have a wee book which I write down important information.  But I kept losing it.  So I decided to put it in the same place every time wrote something in it.  But I would forget where that place is too leading me to, very slowly, ransack my house until I was reunited with it!

Most of my important information is now on my phone which rarely leaves my sight and I have a wall calendar onto which I write all of my appointments.  This serves me pretty well so far and I would be lost without them.  Where possible I try to keep things as simple as I can.  This blog has helped a lot because I can put down my thoughts as they come to me.  I will usually write a few dozen words in a day before I start to lose track of where I am going.

There is kind of an unwritten rule in the Police that doing paperwork on a nightshift is an exercise in futility because you’ll come back to work the following evening only to find you had written a report filled with utter nonsense!  The same is true for me now, more often than not I re-read what I wrote the previous day or a few hours earlier and it is incomprehensible drivel!  I notice I jump around a lot; it is very hard to concentrate though – similar to being drunk in a lot of ways.

Brain-fog can have its moments of levity too, especially when I mix up my words.  Recently I was getting dressed, I couldn’t find my jeans so I asked my wife if she had seen my pair of piddles!  Recently I suffered a flare-up which for some reason I referred to as a back-draft!

I have taken to explain to people I meet that I have memory problems early into a conversation which takes the pressure off me.  I find the more relaxed I am the less my brain-fog is a factor, or perhaps I am less conscious of it.  In a lot of ways brain-fog is difficult to pin down and so addressing it is challenging – you never quite know what to expect or how it will affect you next.

In the meantime please don’t be offended if I forget what we were talking about or I lose my train of thought.  I will most likely ask you the same question a few times, please be patient with me, and trust me I would love to have remembered what you said!

People and Pain

I’m sure it isn’t just me but I felt like I told a lot of lies when it came to my chronic fatigue and pain.  This probably got me down more in a lot of ways that the actual symptoms themselves.  So much of my energy was devoted to pretending that I was ok because I don’t want to burden others.  Conversely when I did confide in someone I wanted them to fully comprehend my situation and, to my shame, I got annoyed and frustrated if I thought they didn’t understand.  Sad as it is to say fatigue and pain are a big part of my life.  They dominate what I do and what I think for the majority of the time.  I guess I was stuck between wanting to offload this nightmare onto others and equally not wanting them to suffer as well.  I felt like I was walking a tightrope made of razor-wire.

I got really annoyed with myself when people asked how I was and I automatically answered “fine, thanks”.  I’m not fine, I’m pretty far from fine but I worried you would be offended if I told you that I was in agony.  And once I’d said that I was fine I then felt I had unwittingly committed to pretending to be fine despite being very much to the contrary.  A lot of the time I haven’t got the energy to explain what’s wrong or argue that no it isn’t all in my mind and no I don’t need a good walk to clear my head!  I didn’t think I was brave enough to break from the social norms and say “you know what, I’m not great actually”.  So I took the easy option which had the added bonus of lowering my self-esteem because I thought people didn’t want to know about how I was.

In reality the problem is entirely with me and thankfully there is something I can do about it.  From now on I am going to be braver.  I made a deal with my wife that I will be honest with her about my symptoms.  So when she asks how I am I will tell her, warts and all.  Already I feel more at ease, together we acknowledge the pain and the fatigue and because of this it has less control over me, and us.  I don’t waste energy pretending to be ok which leaves me with more reserves for other things – things I enjoy.

The next step is to go public!  From this point forth I will do my best to be open and honest about how I am.  Not to the point of tedium though, I’m conscious I do not want to become a ME/CFS-bore but at the same time I doubt I will become a social pariah just because I am honest with myself and others about how I am coping.  It does feel a bit odd, like I am bucking a trend slightly but I know this is the right thing to do.  After all ME/CFS is a hidden illness and that has to change; pretending it doesn’t affect me isn’t exactly going to help that.

In a few weeks I will let you know how it is going…

Hope

This subject is a big deal for me just now.  Now, I am all for having a positive mental outlook, “cheerfulness in the face of adversity” and making the best of what I can in my new found circumstances but I am really struggling to manage or understand what I hope for.

The importance of hope for the future is difficult to understate, it gives me purpose, drive and something to aim for and a sense of achievement if I meet my goals.  But it can also bring me crashing down to earth, into the depths of despair.  So often I hope for something that is no longer realistic.  For instance; I love the mountains and I have spent all my life wanting to spend as much time as I can in them.  However, I have almost completely failed to do this because of work and family commitments.  And yet now, faced with the likelihood of impaired mobility for months, years or for the rest of my life, I am desperate to get into the mountains and I find myself planning how I can do it when in reality I’d be lucky to make it out of the car park. 

I think a lot of what I am experiencing is down to fear; fear of losing something I had always wanted which I held back on doing rationalising that I could enjoy it more at a more convenient time.  Now a flight of stairs is my mountain and I have to readjust my expectations.  But I don’t want to readjust, I want my old life back and I want to do what I meant to do all those years ago and what now I bitterly regret delaying.

I have spent, and wasted, a lot of energy beating myself up for being so stupid and not grasping the opportunities I had in the past.  This leaves me angry, bitter and exhausted.  No matter how hard I want to I can’t change the past, or the present in a lot of ways.  Even my scope of influencing what I can do in the future is now limited.  But despite the debilitating effects of this illness and all the limitations it imposes, there is one thing that isn’t limited by it.  My view.  My view of myself, of what I can do and what I view as an achievement.

I’ll give you an example.  A few days ago I was feeling terrible, just so sore and exhausted.  All I could do was lie on the sofa, normally I would have hated myself for doing this – for giving in to my illness.  But I thought about it logically and given how I was feeling that is exactly what I should have done.   So instead of beating myself up on achieving nothing that day, I congratulated myself on being sensible, looking after myself and resisting the temptation to do things out of a misplaced sense of guilt. 

As M.E. sufferers (I’m still not sure I like that term) I believe we have to shift to a different world view.  A view where sometimes doing nothing is more of an achievement than doing something, where listening to me and my body is more important than listening to others and what I think of myself is not in any way going to be influenced by someone who has never been in my position.

At the time of writing there is no cure for this illness.  Nothing has demonstrably been shown to consistently and effectively relieve our symptoms.  How then can I hope to do something that would rely entirely on my illness being cured or effectively treated when neither I nor anyone else has control over this?  Where does this leave me?  In the position where I change my outlook.   

I can’t hope to be cured because I have no influence of this, but I can hope to understand my symptoms and how I react to them.  I can’t hope to climb mountains again, but I can climb a personal mountain every day even if that involves nothing physical or mental whatsoever.

So what do I hope for in the future?  Well, I hope to change how I hope! 

Diagnosis

Having read a lot of other peoples’ experiences it seems clear that most of us have very different experiences in getting an accurate diagnosis.  I think it is important to share our experiences so we don’t feel alienated or alone.   Let’s call it as it is; to feel terrible in the face all medical evidence saying that you should be fine is frightening, it is, if not terrifying.  I’m sure I am not alone when I say that, at points, I questioned my own sanity.  Reading the experiences of others made me realise that I was not a freak or unique in what I was going through and this is why I want to share my experiences.

In March 2016 I went off work with what I thought was just a bad chest infection, within a few days I was hospitalised with chest pains and subsequently diagnosed with pericarditis.  This continued for about a year and I made slow progress with the help of my GP who was brilliant.  Throughout this time I’d had spells of feeling just awful: severe aches and pains, flu-like symptoms, unbelievable fatigue and a host of other issues.  I returned to my GP on each occasion who prescribed different or increased dosages of pain relief.  Eventually the symptoms would subside and I was left with just the underlying chest pain.

I suffered a relapse the following December and was admitted to hospital for 5 days for what was thought to be a cardiac issue.  However I wasn’t seen by a Cardiologist which seemed a bit odd and counterproductive to be honest. 

I was discharged to manage whatever was wrong with me with support from my local medical practice. This was far from ideal and I was getting desperate.  I took the decision to see a Cardiologist privately who was excellent.  He listened to me, gave me a thorough examination and diagnosed me with costochondritis which is infection/inflammation in the cartilage between my ribs and sternum.  This condition, though painful, is benign and I was advised to get back to work and resume exercise as soon as I can.  I don’t mind telling you I was delighted!

Over the coming weeks and months I did more and more and built up my fitness to a reasonable level.  Work were very supportive and I started back on a phased return in a position that had been held open for me which was really decent them.

As time went on though those spells of unparalleled fatigue, severe pain and flu-like symptoms increased in frequency and length and after a while I felt constantly and consistently awful!  I could barely manage the drive to work let alone actually achieve anything while I was there.  I could not understand how I could sleep for 10 to 12 hours a night and still be utterly exhausted.  My GP was absolutely first class and raised M.E. as a possible diagnosis at an early stage.  She did innumerable blood tests on me to rule out all manner of illnesses and diseases including an HIV test because of possible exposure through my job.  All of the tests were negative or normal which whilst being good news was also deeply frustrating.  I remember wishing that I had diabetes or cancer (how bad is that?) so at least I could be treated.

I didn’t give much credence to the possibility of having M.E. at first but as soon as I read into the signs and symptoms I knew immediately that was what was wrong.  It seemed to fit all of my symptoms and, quite frankly, there was no other explanation. 

After a few months my GP had exhausted all her options so she referred me to a Consultant who I met within a few weeks.  He, too, was brilliant.  He listened to me as I explained my symptoms and my history, he was patient while I forgot what I was talking about due to this horrible cognitive fog we get and he gave me a physical examination.  He concluded that I indeed did have M.E. and offered me support and information by means of websites, social media and books as well as dietary advice to help me live more comfortably.

Although a diagnosis of M.E. is never good I felt such relief that I knew what I was dealing with and that I could get on with rebuilding and adapting my life rather than spending so much energy on wondering what on earth was wrong with me. 

I think everyone experiences M.E. differently.  Each of the symptoms affect us differently.  For me the fatigue, the pain and the cognitive impairment are the hardest to endure.  Resting in pain is impossible, trying to stay active whilst fatigued is almost impossible and keeping myself occupied or distracted is so, so difficult with an attention span of less than a minute.  For some reason, maybe others have this too, reading makes me feel lightheaded and nauseous.  Anything more than a few sentences makes me feel sea-sick!

I was referred to a Physiotherapist for some GET but I am nowhere near that stage yet.  I used to do a lot of running, cycling and cross-fit so I know what it feels like when you have bitten off far more than you can chew physically and you hit “the wall”.  Now, though, a slow walk a few minutes in length leaves me lightheaded, nauseous, my legs shaking, my hips, chest, head, and hands and feet all aching to the point that I can’t stand it.

I find staying still for a while helps my symptoms but not for too long otherwise I stiffen up.  My diet has seen some fairly dramatic changes in the last while which I plan on talking about more later on.  Frustration is a big problem for me as it seems to exacerbate my symptoms so I do all I can to stay calm, relaxed, not let misunderstandings or others not comprehending what CFS does to a person get me down – I simply haven’t got the energy!