Category: M.E. chronic fatigue syndrome

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You don’t have to be religious …

… To work out some things in life just cannot be explained.

When I was a kid, back when I had to run away from dinosaurs and there was no McDonalds or Sainsbury I had some really crazy wishes for a kid growing up on a council estate.

  • I want a 4 bedroom house
  • I want a new car
  • I want children
  • I want to be happy
  • I want to see Disneyland
  • I want to be married

Let me tell you how that worked out:

  • I have a 5 bedroom house
  • I get a new car every three years
  • I have 4 children and 4 grandchildren
  • I am happy
  • I have been to 4 Disney parks (some many times), just two to go!
  • I have been married to a lady, I have been civil partnered to a man, I am now married to a man

Now, what I had in mind as a kid is not how it worked out. To my immature mind I thought we just aspired to something and there would be no cost, there is always a price to pay and those who know me, know some of those prices I have paid.

Every parent says the same “I don’t care what they are as long as they’re healthy”. Well, mine were not healthy, they all have problems, some more than others but, I am grateful for having them. I got the house because not all my kids were healthy. I get a new car because I now am not healthy. I am happy because what I have outweighs what I suffer. The Disney parks, well, they’re just a huge bonus, even I wonder how that happened. Being married, yes, I also got divorced and dissolved (eww) but, that’s OK as we’re still friends. For sure there was a lot of intervention for me to find Dennis, it’s not like our eyes met in the store! He lived 7000+ miles away!

I wrote something earlier, read that:

Sa bata pa kita gisultihan kita nga mosalig nga ang Dios mag-atiman kanato
Samtang nagkadako na kita, ang mga katingad-an nga wala damha nga mga butang mahitabo
Mga butang nga dili nato mapasabot sa bisan unsang paagi gawas sa, nangutana ko sa Diyos ug nahitabo ra.
Samtang kita adunay mga anak, ang Dios nagbilin kanato sa pagpadayon niini
(Kinahanglan naton ang responsibilidad sa usa ka butang)
Samtang sila nagtubo siya mibalik ug diin kita nagkinahanglan kaniya, siya anaa.
Sa panahon nga kita moretiro na ug modawat sa pagka senior
Makataronganon ang kinabuhi
Atong naamgohan nga ang mga importanteng butang sa kinabuhi atong naangkon.
Nasayud kita nga gibayran nato ang bili sa Dios alang niadtong mga butanga ug, OK ra.
Nakakat-on mi nga magmapainubsanon.
Nakakat-on kami nga magmapasalamaton.
Ang akong nahibal-an labaw sa tanan mao
Kung kita naghunahuna nga ang Dios maghatag sa atong kinabuhi sa mga ganti
Sayop mi.
Ang iyang gibuhat dili kaayo klaro apan kini mahitabo.
Dili perpekto ang kinabuhi pero, nakakat-on ta gikan niana.
Usahay ang kinabuhi lisud, kini makalilisang, kini makalilisang
Naglisod mi
Kita makakat-on gikan niana
Unya kita molingi ug, ang atong kinabuhi mao ang kinabuhi nga atong gipangayo.
Bisan kinsa nga naghunahuna nga ang Dios walay bahin
Nagtuo ko nga mahimo nimong gimingaw ang usa ka daghan sa dalan!

When we are young we are told to trust that God will take care of us

As we get a little older, strange unexpected things happen

Things we cannot explain any way other than, I asked God and it just happened.

As we have children God leaves us to get on with it

(We have to take responsibility for something)

As they grow he steps back in and where we need him, he is there.

By the time we get to retire and accept being a senior

Life makes sense

We realise that the important things in life we got.

We know that we paid God’s price for those things and, it’s OK.

We learnt to be humble.

We learnt to be grateful.

What I know more than anything is

If we think God is going to pave our life with rewards

We are wrong.

What he does is never so obvious but it does happen.

Life will not be perfect but, we learn from that.

Sometimes life is hard, it’s awful, it’s terrible

We struggle

We learn from that

Then we look back and, our life is the life we asked for.

Anyone who thinks God played no part

I think you may have missed an awful lot along the way!

Things I know.

  • If there is no God, how can there be an afterlife and, I know there is because I have witnessed it. I saw my granddad after he died, clear as day, when my mum was alive she told me that her old landlady promised that when she died she would make something move which didn’t usually move and they would then know, she was OK. Soon after her death a hot water bottle hanging on the wall, moved. When my mum died, before I knew she was dead, weird stuff happened. She was in hospital, I didn’t even know she was that ill. Her crutch which had stood at the top of the stairs fell over. I went to pick it up and her dressing gown fell off the door behind me and on a door I had not walked past. Those delays forced me to stay home an extra few minutes at which time the phone rang to tell me to get to the hospital. She had died just before they called me.
  • I overdid it with two of the children back in the 1980’s. We walked too far, I mean, miles further than we should and ended up on the wrong beach in Spain, the one which had no way to get back and it was really hot. I could see no way of getting back so I did a hail Mary, well, in the non religious sense and I prayed. Within a few moments a very random Spanish lady who spoke little English approached me and asked, was I OK. I don’t know how much she understood but she gestured for us to follow. She squeezed us into a tiny little car with her kids and drove us back into town and then drove off before we could say thank you. Intervention of a divine nature? I choose to believe that, yes.

There have been many similar experienced throughout my life. Everything I ever asked for I got. I say God has a wicked sense of humour because he did. This would be an example and a tiny one. I ask for a lottery win and, low and behold, I win the lottery. Sure, it’s £1.75 but I wasn’t specific!

I always wanted to be different, right from as long as I can recall. My questions were answered years later. I was gay, I was mostly deaf, my eyesight is shite, I was born with really short legs, my teeth have always been terrible. So, yes, my feeling was correct and I am different. Perhaps I shouldn’t have wished to be because, this isn’t what I meant when I asked to be different.

I am no bible basher. I have no respect for any organised religion, absolutely none. I honestly believe they are all power hungry, dangerous and corrupt. But, just because they created their own version of things doesn’t mean that the basic of those things are wrong. What they are based on was pure. Things like us all being God’s children, us all being in his image and created equally.

None of those things sit at all well with my being condemned to hell for being gay. Nothing pure demands me to show pure devotion to the organisation with gifts of money.

No, I believe in the pure being, that the church is all around us, freely created. That we can speak freely, there are no rules on how to speak to God.

You know what? I also believe that we are here for a reason, we are here to learn to be better, to live a life we do not understand or accept. The homophobe must live life as a gay man before he can be reconsidered entry to eternity. The murdered must live life experiencing tragic loss … indeed, until we understand how to be good people without prejudice, we just keep living one life after another until we finally get it. I think I might still have a few more to go as I know I still have some prejudices I need to resolve.

Anyway, until than, thanks for reading

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PEM

Post-exertional malaise (PEM) is the worsening of symptoms following even minor physical or mental exertion, with symptoms typically worsening 12 to 48 hours after activity and lasting for days or even weeks. PEM can be mitigated by activity management (pacing).

I have been suffering for a few weeks now and I am hoping that this week I can get myself back to some sort of pacing. Sadly, unless I want to risk something going horribly wrong, I am going to have to say no a lot more often.

Ah, but, I hear you say, you just need to push through it.

That is precisely my problem, I keep trying that. The results of stupidly trying to push through knowing that this very act makes matters significantly worse astounds me and yet, that is what I have been doing.

Do you know what it feels like to forget your address? I have lived here over 20 years and I just couldn’t remember it. I was totally relaxed, not stressed at all and my brain just wouldn’t go there. That is a result of pushing through. It’s scary, it feels how dementia must feel. It’s not just a moment of blankness, it took me many minutes, too many minutes using a process of elimination before I got it close enough, it still wasn’t quite there but it was near to it!

Driving knowing I am too tired, that I am not at all alert and having to push through to get from A to B. That is mega scary. Planning a trip around a nap break. Not because I didn’t sleep at all, just because it didn’t work.

By exercising we are not referring here to going for a run or even a walk. It can be something like doing household chores, even feeding the cat! Mostly the above chart is spot on. It’s all very depressing in nature but, it is what this condition feels like and it’s not imagined.

Having too many days when waking up feels exactly the same as heading to bed, nothing has changes apart from some missing hours. Knowing that last night I went to bed feeling like this but somehow, I got to get through this day feeling how I felt last night!

Pleasure being measured by the possibility of just sleeping. Getting into bed, putting the phone too far away to hear, no alarm clock, no deadline, just resting.

The absolute madness of seeing a call come in on my mobile and knowing that the very action of taking that call is going to ruin every plan I had for the day. Trying to stay cool and not get mad at them when right there and then I just wish they’d left me alone. It’s always wanting me to do something, ideally now. So rarely do I get a call where someone just says “fancy a coffee, my treat”.

Even when I am given help I hear through the grapevine that they felt compelled to do them, like I am some great burden. It’s just so amazing when someone does something for me which makes my life better, no complaints, no reluctance, just doing it ‘because’.

Just writing this I feel my mind shutting down. Typing is more difficult as I go, more mistakes. I lose words. I start of typing and cannot think of the next word or anything like it. I feel what I want to write but the words just won’t come to me.

In the diagram above it goes a little understated or, over emphasise on quite hefty activities. It seems to imply that a sufferer going about their normal daily tasks or work and social suffer. This is way more basic than that. Just making breakfast cereal in the morning can render me unfit to drive. I know this and tend to avoid eating when I know I have to drive. As for the blue section, most are such radical events. I can get exhausted just by an attitude someone gives me, anything negative at all. It’s not realistic to expect constant adoration and praise but, all too often I feel I am being got at, used even just by the vibes I pick up that I am just too much effort.

Tomorrow I have a couple of things I need to do, I might even trim those down a little. Thursday I just have to get Dennis to and from work. I need to force myself to sleep at the other times.

I saw a shocking picture of a friend being treated for a very noticeable condition. I know they are getting shit tons of support (rightly so) and just sometimes I think to myself, why can’t people just see what I am going through here?

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Incommunicado

From 8th May for at least 5 days I have to give notice that whilst I might be available for social occasions I am totally out of bounds for any assistance anyone might need.

This includes but is not limited to, driving, IT support, Interior Design, cooking and so on.

I owe it to ‘me’ to take the break, get myself some sanity back!

When I get to the point I struggle to remember my address and fall on escalators, it’s the time to stop!

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Thoughts today

For most of my adult life I think I’ve lift for now. Maybe I am in the minority for that with so many investing for the future, ensuring their retirement is the best time of their lives. There is a lot of merit in that but, here is why I chose not to do it.

Way up there on the top of that list is that my mother died at 52. Her and Dad went down the route of saving for their retirement, buying a house and so on and yet, there she was. For her it didn’t pay off and how might her life had been different had she lived to the full whilst she could?

My nan would have got another 13 years out of her life in retirement though, she didn’t take the route of investment for the future. She remained in her council house her entire life and seemed happy. Nowhere near as stressed as the home owning elements of the family. Her husband, my grandad, he went at 67. He got just two years of retirement before he died.

A boss of mine had this huge retirement party when he left at 65 on his last Friday which turned out to be just that, his last Friday.

You may have gathered that what I am saying here is, to me, buying a house, going short, managing for most of my life didn’t seem to make sense, I just didn’t know what the future would hold.

I cannot say how my life would have been different if I had of gone the house ownership route. What differing opportunities I may have had and taken. Would I have picked up a virus in 2014 which would leave me disabled for the rest of my life? Maybe not.

If I did not invest for the future, what did I do?

Travelled mostly. My kids didn’t just read about Europe at school, they went there and not just the tourist places either. I know I got a lot out of that and I am sure they did too. Perhaps even a love of travel which will pass to my grandchildren, a legacy maybe?

My homes were always comfortable. Furniture was placed when it needed to be as were carpets and walls decorated. The kids grew up in lovely places despite all the family difficulties we were to face.

Sure, in the back of my mind there was always that question: What about when I am older and perhaps in need of extra love and support? I always imagined it would be like my nan. Always getting someone popping in, invited over for Sunday dinner, doing holidays with her children and never alone at Christmas. Sadly, it is looking like that is not going to happen to me but, it was my gamble to take and I would do it all again just the same.

Here and Now I still need to invest in my comfort. All the carpets needed to be replaced, many are over 20 years old. It was bugging me that they looked so horrible and were impossible to keep clean so, they are being done. I still feel the need to feel safe and comfortable in my own home. I know it is ‘only’ a rented place. These spends will gain me nothing financially but, that is not my chosen path. What they do now is to ensure my life is as pleasant as it can be.

The problem for me, having a much younger husband is that we differ in our outlook. When he retires I will be 83 presuming the retirement age remains as it is. I won’t have many years in front of me assuming I last that long. Investing heavily now for that future is too high risk for me. For him it makes perfect sense. In 20+ years he can retire in comfort to his country of birth still a relatively young man. It makes sense for him and yet, not for me. Sure, I could get lucky and live until I am 100 but, it doesn’t look likely given my health issues.

My children, they aspire to house ownership and I would always argue, if the salary is high enough that it’s not a significant drain on daily living and leaves plenty of saving room then, it’s good, long term it makes sense knowing that some day that mortgage is paid and that will be extra in pocket income. However, if they must struggle to afford it, I can only advise, don’t do it. Enjoy your lives and your time with the children whilst you are able.

Ultimately, we only know which case is right or wrong when we die. Only then do we know whether we made the right choice or not. For now, I have some amazing memories to carry with me, worth every penny.

I’ve included a gallery which only brings me up to 2010 with so many great times after that.