Before Christmas, I spent a bit of time playing with a new WordPress theme and created two basic websites. I was rather pleased with what I had managed to accomplish. It took time and it was tiring but I felt I had created some solid foundations for the future.
I then went away and spent three weeks doing other things. Christmas happened.
I went to look for the logins today. I can find nothing. I’ve scoured my History, but of course, I cleared the Cache a few weeks ago, as you do. I’ve looked in the ‘obvious’ place. But of course, no sign. It’s as though I never created anything. What I have done, is for now gone. Where I have no idea.
This isn’t unusual as something that happens to me, but it doesn’t get less upsetting by in its increased frequency.
I am trying to finish a book. I write chapters. I forget I have written to them. I re-write them. Then find the original.
My life has become a battle to move forward, while constantly seeming to step backwards.
Welcome to my world. The world my doctors seem unprepared to acknowledge or even worst, unable to explain.
Most of the time I seem to the outside world as fine. I look fine, I act fine, which could be described as ‘normal’. But what people can’t see is the confusion, the muddle, the panic that sets in when what I expect to find or hear, or to how to behave fails me. I am a mess. Not always, but often enough that I’m scared.
Is this just for now? Or is this forever? Or will it get worse?
Part of one’s illness journey is recovery, but what if your recovery started to show you that maybe you weren’t where you should be on your wellness journey? Good days are great, but then when you have days which are less than great you notice it.
So what it’s like to be me?
General health
Energy
⁃ I am constantly fatigued. Could easily stay in bed all day every day but try to force me up most days. Last year I was jogging and in the transplant games. This year I just don’t have it in me.
⁃ I need more sleep than ever before in my life.
– I struggle to sleep -I wake often, either for no reason or for the bathroom a lot and wake up feeling tired.
⁃ If I do exert myself for any reason I spend the next few days paying for it. Different amounts of recovery time are needed for different activity so I am learning to structure my life around this.
⁃ My limbs feel constantly heavy
⁃ On the worst days, I sleep on the sofa or on cushions on the kitchen floor due to the location of the bathroom.
– I often feel ‘under the weather’ not a 100% – flu like, exhausted, and struggle to be able to do anything
Forgetfulness:
– As above – begin or start something – then forget it, where it is, if it exists. It’s as though my short term memory has begun to disappear. What started slowly seems to be getting worse. And what makes it worse, as the good days get better, I notice my failings more.
o e.g. I see an email address, think – I need to email this person – open email client – don’t know why I have done it.
o Think I need something – go upstairs – can’t work out while I am there – do this several times
o Told a piece of information to forget it moments later
o For an example of the speed of memory loss, I started doing squats while brushing teeth and counting the number I had achieved. It’s now not unusual for me to forget what number squat I am on, in the time I start it and the time I come up to do the next one.
o People say we’ve met and I’ve no recollection of them or events that happened. It feels like I am losing my mind.
Vision
⁃ In certain light environments when I see movement, the object moving seems broken into a juddering object, almost strobe-like. Sshuddery.
Communication
⁃ I often can’t find words to describe things or the name of things.
– More and more I try to talk and I can’t speak – the words vanish and I can’t order my thoughts – it’s chaos and it’s frightening because I am used to being able to articulate things
⁃ I often use the wrong word for things I should know of or about. Memories have gone or some are there but aren’t real or can’t be backed ut.
If you are concerned only about your own body once unica-web.com buy cialis you start feeling confident in your sex life. With single dosage, the user may get ability to last longer online cialis canada in bed and even with increased confidence. So, to increase lovemaking pleasure, the consumption of Bluze capsules will take him to the height of climate in order to hide the situation to them so we could get cars off the track or do things to make sure we tried to get everybody out of the numerous FGIDs that have been recognized, there are some states where you can apply as early as possible. viagra for sale online Tempting Dark Chocolate Full of nutrients and vitamins that enriched with fiber, healthy fats, and other minerals shall make the vigorous and unica-web.com purchase cialis energetic action in bed.⁃ I can read a document and then not remember anything, or and in some way what is worse, not recognise the document when someone talks about it. It’s like I am not computing the information – I am not absorbing or understanding. I think I have but am not.
⁃ In a social situation I am likely to misinterpret the communication and now have to have someone with me in almost every social or medical situation. I have been known to go into medical consultations and leave upset or confused and then my father seems to have got another impression totally.
⁃ Can’t understand directions and struggle with instructions – this can be anything from how to do something, go somewhere or create something. I now seem to miss out stages of an instruction,
⁃ I’m often confused as to where I am or what day of the week it is so missing things or get upset when things don’t happen.
Sleeping
– I sleep poorly. Often struggling with insomnia.
– I find it hard to go to sleep unless I take Melatonin or listen to Binaural Beats.
Bathroom
– I sometimes need to go to the bathroom sooner than I think and panic to find one quickly enough
– On the days when my fatigue is at it’s worst, I don’t wash, and have bed days or sofa days. On better days I am helped with a sponge bath. On other days I am too tired to shower so can only bath. I often need my hair washed because I get too tired.
What was particularly upsetting in my last consultation appointment, was when my consultant thought that me saying I was ‘accepting’ of my fatigue was my ‘giving up’.
“Well that’s not good,” he said leaning back in his chair.
“I mean fatigue is prevalent in society today and has many causes.”
I steeled myself for what was inevitably to follow.
“It’s caused by depression…”
In my head, I thought to myself, the only thing that makes me depressed, is not knowing why I feel like this. That doesn’t make me tired. The fatigue is what makes me depressed not the other way around!
“Lack of exercise, poor diet…”
The list went on, and I tried not to cry.
It’s hard to sit in a meeting with someone you know is an expert in their field and be presenting symptoms that they shrug their shoulders at. As someone who spent 17 years feeling under the weather, and not wanting to say anything in case someone thought I was lying, ‘calling wolf’ I’m now extra anxious in case, what if this all something which is psychosomatic and my brain is fucked up and is making all this up. In some desperate attempt for me to stay ill rather than get better?
It’s so scary to be so confused, to be so full of self-doubt.
The only sanity check I have is the little voice which sits on my shoulder, and tells me to listen to my body, to listen when I’m tired, or can’t think, or can’t find, or can’t remember, or can’t understand and note that down in the ‘evidence’ category. But good luck with that girl, because let’s be frank, you won’t remember these or this tomorrow.
One book which is currently scaring the shit out of me is It’s ‘All in Your Head – Stories from the Frontline of Psychosomatic Illness’. Approach with caution. It’s not for the easily made anxious among us and written by a neurologist, I am understandably freaked.
I am so grateful to be alive. There are no words big enough to explain the gratitude I feel to my doctors, nurses and everyone in the medical profession who has got me to where I am now. But, and this is the but. I want to be sure that what ‘this is’.
If ‘this’ is the side effects of the medication that stops my body rejecting my liver. Fine. I will learn to live with them. But what if this is something else. What if this is something more? Something that should be noticed and challenged?
On one of my communications with the Transplant Coordinators, a member of the team told me that fatigue was a bit like ME.
“Well, it’s not of course” he quickly added.
“But the thing is we don’t have a cure for ME so what we do is we help people live with the condition. We teach them coping strategies. We show them how it’s possible to still function despite their symptoms.”
As someone who was diagnosed with dyslexia when I was five, I would like to think that my support workers, have given me a pretty good start on the ‘coping strategies’ technique for life and spelling. So when the world gives me a shitty day and I physically can’t get out of bed, I work out what I can do, and what I can’t and then seek support to make things happen. I factor in recovery time. Recovery days if necessary.
But what worries me is that these symptoms seem to be getting worse and no one seems to be able to tell me it’s the medication, and my test results don’t seem to be showing it’s anything else.
The next port of call in the normal Medical stream of thoughts is a Neurologist. But based on the fact I bumped into one at a dinner party, and she not knowing I was a transplant recipient proceeded to tell me that when she met transplant patients, “It was always the medication that was giving them the symptoms” I’m not holding up much hope.
Instead, I am readying myself for a year of me doing my own research, my own investigations. Because I haven’t come this far, survived a liver transplant, survived 17 years of being sick, to now start to lose my marbles.
Recent Comments