Category: My Thoughts

I have mentioned this before but, I am sure others find it difficult to recognise that any of this applies to me.

One of the side effects of it is that the sufferer (that’s me) keeps pushing through which is actually the very worst thing which can be done.

Take a look at these posters showing the typical symptoms.

I am going to concentrate on the last poster and explain it, how it relates to how I am …

• Muscle Pain – Can be severe and is random across my body and can change throughout the day. It’s rarely a ‘real’ pain in that, there is no injury or damage creating it. What happens is that the pain receptor nerves randomly fire sending signals to the brain identical to those as if there were a physical injury so, to me, it’s very real.
• Joint Pain – Much the same as Muscle pain only this one creates confusion with my joints leading to weakness which are the cause of falls.
• Post-exertional fatigue – This doesn’t differentiate between physical or mental exercise.. In a ‘normal’ person they can have a run and the recovery time is really quick. If I were to run it could use all the available energy I have for that day. Just typing this out for you is killing my available energy. Prolonged exertion such as several days of a ‘work’ equivalent will often take weeks to recover from needing considerable bed rest, more on that later.
• Chronic Fatigue – This is the ‘normal’ state for me. I never feel fully awake, never ever. Imagine how you would feel if you lost a complete night sleep. That is how I feel on a good day. On a bad day it is two nights sleep and jet lag.
• Brain Fog – This one looks like dementia which scares the hell out of me. Going into a room and not remembering why is common. Forgetting names or muddling names up. Not recalling simple words in conversations.
• Memory Issues – This isn’t much difference to brain fog but specifically it refers to not being able to learn new things, such as a language. Having a lesson and understanding it but, losing it all really quickly.
• Concentration Difficulties – In me this is such things as struggling to watch a TV show or a movie
• Headaches – Thankfully, this is one I rarely get.
• Sleep Dysfunction – This is a huge part of it. Essentially, this illness stops my brain from recognising when I have slept. A sleep monitor will show several hours of REM sleep yet, my brain registers nothing. It is similar to those people who don’t register they’ve eaten and always feel hungry. It is also not something whereby I can logic my way out of it. Even though I know I slept OK, the chemicals my body would produce with sleep to refresh me, don’t get produced. Several hours sleep might be needed just to achieve a minimal increase in energy levels.
• Heat/Cold Intolerance – This is quite bizarre. It is around 14°C in this room and yet I am sweating. If I picked up a cool can of drink, I’d find it uncomfortably cold. It is why I now must have a car with a heated steering wheel and air conditioning. Things which used to be a luxury have become a medical essential.
• Marked weight gain/loss – This one makes perfect sense. If I cannot exercise as I used to then unless I reduce my food intake radically, I am going to put on weight quickly.
• Flu like symptoms – Again, I am fortunate that this doesn’t happen often. That said, other symptoms I shall mention later do resemble this.
• Sweats – Not in the last list but in others and related to the point above. I randomly sweat and feel really hot and this has nothing to do with the temperature. It is annoying during the day but, it wakes me up at night to the point I will throw the bed clothes off and then wake up some time later shivering.
• New Sensitivities – For me this is light and sound. I find many sounds uncomfortable. Even music I have put on myself can become uncomfortable after a while. I love bright light, a glorious sunny day is heaven to me but, at the same time, really painful.
• Tender Lymph Nodes – Yes, this is true but, it doesn’t trouble me as it seems so minor by comparison.
• Sore throat – Yes but again I don’t see this as particularly worrying
• Orthostatic Intolerance – I feel this is too closely connected to some of the earlier points to deserve a separate mention. Needless to say, I find just standing very uncomfortable.
• Vertigo. palpitations – Not something I suffer from
• Irritable Bowel Syndrome – Most definitely and one of my main reasons for never wanting to stay in someone else’s house. Alongside this is severe bloating and discomfort. When I have to go it is consistently explosive and creates a huge mess. Again, one of the reasons not to be somewhere I can’t easily clean up. Just about anything can bring it on.
• Bladder Dysfunction – My bladder can ‘forget’ to tell me I need a pee for an age and then it goes from not needing to pee to major bladder emergency in minutes!

So, that breaks it down for you.

What can you do to help me?

• Don’t have expectations that I can do what it looks like I can do
• Don’t be shocked if I use a walking stick or an electric scooter to get about
• Do ask questions if you are unsure about what I can do, it will change from day to day
• Please don’t question my decision not to drink alcohol, it makes my condition worse very quickly.
• Please, don’t be offended if I appear anti-social. It just means I have run out of energy and need to rest.
• If I seem angry just ask me if I am OK, it’s most likely I am really struggling to get through my day and will need some help.
• Talk to me like I am ‘normal’. I don’t have dementia even if it seems like it! I am just really, really tired.
• If I am driving and say I need to pull over for a nap, allow that to happen, indeed, encourage it.
• Make sure I drink plenty of water, dehydration is a common issue.
• If I cannot learn your language it is not because I don’t want to or I am not trying. My brain just isn’t functioning at that level much of the time. Never give up trying though. Just try not to get frustrated as, there is no point, your frustration is nothing compared to mine.
• If I mess up my words or get yours and everyone else’s name wrong, it’s OK to laugh about it, it is how I deal with it.

Male suicide is at an all time high and it’s practically ignored. Were it women who were killing themselves something would be done but, for some reason, it’s not something men want to talk about.

Men don’t tell others when their World is falling apart. They don’t complain when, perhaps they should. They don’t go to their GP with medical issues and they suffer in silence until they cannot deal with the things which weigh heavily on them. Why are we not doing something about this?

What should you do?

If you have a male friend and you notice any change in him at all, speak to him. If you are a man, still speak to him. It doesn’t make you gay, it doesn’t mean you fancy him. It is just one human reaction, an act of compassion to another person. Never tell him not to cry or to pull himself together. Never point out that other people are watching, it doesn’t matter.

It is not just men who go to war and pick up a gun who are heroes, just helping one other man is as heroic an act as anything the forces do. Just letting one other man know you care is often time all it takes.

If this is someone you look up to, don’t look down on them because they are not coping, give them support. They can still be your hero if you have to be their hero.

Why am I writing this now?

Well, it’s not me, it’s you! I am fine but, I know how not fine feels. I am struggling like hell with the pressures of life and my illness but, I am OK. I am managing and my coping mechanisms are in place and mostly functioning. But look, let me show you signs in yourself when you know that stuff in your life is getting on top of you. I know as it’s happening to me right now.

Little things suddenly get you really angry like, you want to things sorted as they’re just wrong, someone needs to know they are wrong. The war in Gaza or Ukraine, the government or, the stupid price of fuel at Sainsbury right now. It’s realising that our reactions to such things are chronically disproportionate to how much they personally affect us. Maybe there is a feeling of obligation to ‘get involved’, get it sorted and, maybe, you feel if you do get involved you will have at least cracked one problem that annoys you in life.

You know what though? These are not ‘your’ problem. Sit down for a bit and contemplate all the things making you angry or confused until you come to some closer to home.

I am realising now how events going back decades in my own life still have a huge effect on me and how I think now. Certain things trigger me. A comment which might even seem like a funny joke to someone else and to me, it gets me so angry, so uptight and that is, to me, it’s a trigger.

Bottling up our history

When we have a bad experience we store it up. We may not realise we do but, as men, we do. I am sure some, perhaps even a lot of women do this too but, right now I am focusing on men.

Maybe someone significant to us died when they were young or, at a time in our lives when we vitally needed them? Maybe we have been physically or emotionally abused? Perhaps we were given unrealistic expectation of what success looks like?

What do I have?

I grew up raised by an overbearing father with expectations of his son I did not match. I was expected to be captain of every school sports team or, at least, the football team. I had zero interest in sport. I was meant to show a young interest in girls, I showed zero interest in girls. I was meant to match the men in the family and be high up in banking, I had zero interest in banking and was not actually very fond of maths either. If I achieved anything it would be “well done … but.” I was emotionally abused by him well into my adult life.

I was emotionally and physically abused in a Long Term Relationship. The shame of that was huge and, of course, I genuinely had no one to talk to as, well, men don’t get abused you see, doesn’t happen.

I was raped by a good friend. I stayed with him overnight, I don’t recall going to bed but woke up with him raping me. I felt confused, very confused and I did nothing about it. After all, even I believed then that men don’t get raped but, what else do we call it when we discover someone screwing us from behind without ever giving them permission to do that? It wouldn’t even matter if I’d ever said it might be OK, at that time he did not have my permission. It was unprotected too and for weeks after, until I got myself tested, I was terrified I might have contracted something.

I became a single dad. I am taking nothing away from the male partners I had a LTR with at the time but, they were not parenting, they were just there. I was abused in another way at that time, by the discrimination by women who would not accept my role. Teachers who kept wanting to speak to the mother of the kids just as one very basic example. As a gay man I also had a social worker question whether it was appropriate for me to take my son into the male toilets given my ‘persuasion’. For the benefit of doubt, my son was doubly incontinent and needed to be toileted. Fortunately, there was a witness there who herself put in a complaint.

How am I affected now?

Yes. I did notice myself get angry when I saw Sainsbury have raised petrol by nearly 3p a litre in the past week. My brain was going there, who do I write to, this has to be stopped. That’s a warning sign, it’s the time when we need to either talk to someone or, we need to have a good coping mechanism in place or, both. Come on, realistically, I only have a tiny amount of energy each day, do I really want to waste it on such things?

How do I live with it?

One of my ways of dealing with things is to write. Write in the hope that it might encourage another person to not let it go to far. To appreciate that many of the things we think are important really are not and can be ignored and, many more things we are ignoring are the very things we need to sort out either in our own mind or with the help of someone else.

I can honestly say I rarely feel depressed, rarely feel out of control. Sure, with my medical condition (M.E.) I do struggle just thinking but, I am still mostly in control of my destiny.

Earlier I knew I needed to eat but, the thought of just making a sandwich was too much. My solution was to do a quick analysis, why was I feeling like that? The actual process of making a sandwich was painful but, manageable. The alternative was to go back to the car and drive elsewhere and eat. Logically just making food at home makes more sense but, that would only be if I ignored what was really the problem. It has nothing to do with whether I could make a sandwich or not, it had everything to do with needing some ‘me’ time. A time when I didn’t need to avoid tripping on the cats, when I didn’t need to speak to anyone where I wasn’t able to get distracted and take on another task around the house.

I went to McDonalds, I got a free meal (I go there too much and earn a lot of points apparently). My phone data was off, I ordered on my phone using their WIFI and chose to ignore any messages coming through. For just half an hour I shut the world out.

… and after?

Sure, I saw the same sign for fuel but, it didn’t bother me, it’s fine. As soon as I got home the messages came in, the phone kept ringing with problems to solve for other people but, this is my life. It will not always be this way and I have maybe written something here which might help just one other person.

Today is a bit of a stressful time.

My health is low, as it generally is but, everything I can try to do to ease things off a bit are unavailable to me right now. I am dealing with some really serious shit trying to help out my disabled kids and, then a few days ago I discovered my ex father-in-law had died, he was 84.

He is my ex father-in-law because I got divorced from his daughter in 2001, we’d been married for 14 years.

Her parents factually became my parents in 1986 and, to me, even post divorce they remained that way, I still kept calling them mum and dad, it wouldn’t have felt right doing anything else. But, with divorce comes consequences and I am feeling those now more than ever.

Let’s go back a bit.

I first met them in 1985 which was a time in my life full of trauma. It was when my mum was really ill, family connections were breaking down all over the place and my parents split as a result of my dad having an affair. On an even more personal level I was struggling with my sexuality. I knew I was gay but, in the 1980’s, where I was living, that was not acceptable on any level and I therefore conformed, picked a girl and got married. In so many ways I wish staying with my boyfriend who I loved was an option but, circumstance was against us.

Kay & Geoff were kind and loving toward me. An oasis of peace and security in amongst my emotional storm. Sure, we’d argue sometimes but, all families do that. She particularly was a very stubborn lady so was he but he was also sensible enough to do as he was told. When home life was driving me nuts, there was safe.

It was them I went to when my mum died in 1986, them who made our wedding happen just three weeks later and gave me the strength to keep going when my blood family deserted me. except for my dad who I wish would have taken a step back! It was her who held me through my tears of sadness on losing my mum and then that I realised my feelings for them as my ‘in law’ parents was at that level a relationship can get when we think of it as special.

When our eldest was born, again, it was them I went to. Kay cooked me an amazing dinner and Geoff took me to the club to be congratulated by the men. No one had ever fussed so much and it was so special.

Going over there with the kids, the Sunday dinners, the use of their spare room so I could sleep and get ready for the drive home. It was all so special to me.

When we decided to divorce I was worried this would all stop but, it didn’t. I’d still take the kids down there and, this carried on when it was my kids and my grandkids I was taking and, again, I’d sleep in the spare room and it was all so lovely and safe as it always had been.

Geoff never spoke much, not to anyone. No matter the company he so rarely fully engaged so I was honoured to have conversations with him. Then Kay died and everything sort of fell apart. It was right during the covid period, he couldn’t even bring himself to go to the funeral and we tried so hard to make it safe for him. I never got to meet him since she died.

I would write as often as I could, send pictures and update him on the goings on but, the relationship went with Kay and he was obviously just waiting to join her bless him.

Since he went I have personally felt lost and isolated. I am just the ex son-in-law, no one really any more. When my mum died, I was likewise ignored except by Kay & Geoff. My dad for some reason felt he was still important because of how long they were married to hell with that he broke her heart. Everyone else rallied around my nan because, my mum was her daughter, I was told her feelings counted more than mind and everyone should be there for her. So, here I am again, everyone else wanting support for their grief (and they’ll get it) and me alone, feeling how I feel and, I am ‘with feelings’. I need to get through this but, I am alone on the whole. I can be given sympathy by friends but, in reality, I am not family any more, I am not qualified to feel this way. I have my role and that is what I am expected to do, be the strong one.

I will be but, the timing is absolute shit. Meetings, meetings about meetings about meetings be it in person or over the phone. I’ve had 2 important, essential phone calls this morning, responded to two further email. I have had one long meeting today. Tomorrow I have another meeting. I’ll be honest, much of the time my brain is struggling to remember who I am talking about.

I’ve got buried emotions in a crypt built for way less than I am putting in it.

Very soon I will need a complete and absolute break and if I don’t choose to do that, I feel life is going to make that choice for me.

I cannot take a break, parents are parents for life, it is what I will do as long as I am able for all my kids, there are none I don’t worry about, none of them and my grandchildren, always seeking ways I can make their lives better and likely screwing up in the process but, at least they can’t say I am not trying and, I am sure they very often thinking I am trying!