Procrastinators of the world unite……..tomorrow

For the last few days I have been in a bit of a funk, not enough sleep, too much pain and ridiculous brain fog / confusion will do that to a girl. I try very hard not to worry about the confusion but I have to say Sunday’s episode scared the living daylights out of me.

I have of late had horrendous neck pain, it wakes me during the night, in the mornings I can be ok for an hour or so and then the pain starts. Initially it feels like someone has given me a swift smack with a shovel to the back of the skull. Then the pain travels to between my shoulder blades and down my arms. Any movement of my head outside of a neutral position increases the pain. Whilst typing this there have been points where the Chromebook has nearly been thrown out of the window due to frustration with the pain.

Sunday was one of hubby’s days off, time together is precious as of late pain and the lure of the current storyline of The Archers (soap opera on BBC Radio 4 for my overseas friends) has meant it’s bed time just before 7pm. We had a list of jobs that we wanted to get through one of them being cooking hubby’s meals for the month ahead. We make a variety of things chicken casserole, chicken curry etc and put in the freezer, portioned out ready for when he gets home from work. I say “we” but really he does the bulk of the work due to my inability to hold a knife for a long period of time without my hands giving up the ghost. I like the time we spend cooking as we chat with no distractions other than Mollie (dog) begging for bits of raw vegetables broccoli and cauliflower being a particular favourite.

I have found the longer I sit up, the worse the headache becomes unless I wear a soft neck collar or lie down. The soft collar is something I hate wearing, it is mainly vanity, I look hideous with a neck collar on. I know it’s hardly haute couture on anyone but to me it marks me out as someone who is disabled, I am the same about the wheelchair however the neck collar is something I am struggling to accept. Despite it being rather a necessity these days to stop the headache as I can’t spend my life horizontal. I didn’t wear it Sunday and the pain in my neck / head / back and arms increased to a horribly violent level. I also noticed that the longer I sat up the more confused I was getting.

When I say confused it is more like I can’t remember things, I suppose in the grand scheme of things it is a kind of confusion. It was so bad on Sunday that it freaked out both of us. Whilst we were cooking, I pointed to a kitchen utensil, I just couldn’t remember what it was called. Now before I got sick I did all the cooking, I loved having people over for Sunday lunch etc. So to not know what the utensil was called frightened me.

This was the conversation:

Me: “Jay what is this called?”

I saw the look on his face that was saying what the fuck is going on? I think initially he thought I was either joking or testing him. When I asked again he knew I was serious so he asked me

Jay :“What do you think it’s called?”

Me : “ A cauldron”

I knew in my head that the utensil I was pointing to was not a cauldron, there could be a tenuous connection to a cauldron, so I was going along the right track. I knew in my head that it wasn’t a cauldron but the word wouldn’t come.

Jay: “It’s a ladle”

“I knew it wasn’t a cauldron” I replied followed by a nervous laugh. I then left the room heart pounding because I was so wound up by not knowing what it was called.


I can’t lie this latest bout with mental confusion upset me and shocked me enough to make me realise it is time to take it seriously. I am still really concerned by it. To have a complete mental block like that isn’t unusual however the cauldron / ladle incident was just the first of many on Sunday. What I found really bizarre was that I could type fine but my speech was the issue. It seemed the words were getting lost on route from my brain. I was doing my usual of replacing the word with a completely different one, that is normal (for me) but to be unable to name a household object and know the word I wanted to call it was completely wrong was distressing.


Hubby was frightened by it too although he did his best to cover it up. Explaining that I was just probably tired from helping him. I have been tired before, it’s never happened. I don’t think either of us can keep making up excuses for the level of confusion that I am suffering from – forgetting if I have taken my tablets (when you take opiates it’s quite important to know), forgetting something immediately after I have done it ( I spent 15 minutes looking for a pillow today, I had put it on the bed seconds earlier), forgetting what shift my husband is working, forgetting what day it is and being completely convinced it’s a different day. It is getting worse and I can’t keep on burying my head in the sand thinking it is going away because for weeks now it hasn’t.


The problem is a few months ago I spoke to the doctor after another particularly bad bout of confusion. I had completely messed up in my head what shift hubby was working, which resulted in me making a snarky phone call to him asking why he hadn’t rung me on his lunch break. The problem was it was now 2pm and he had started at 1pm, his lunch break was hours away. I had forgotten he had been with me all morning in the hour he had been gone. I was also at that time messing up taking my medication taking too much or too little. The doctor helpfully suggested that I write down when I took the medication failing to realise that firstly I had to remember to write it down and secondly remember to look at the notepad before taking any more. When you already have memory issues asking someone to remember more is not helpful.


I know memory lapses are normal, we all have moments where we walk into a room and forget what we have gone in there for. I understand that, what I don’t understand is why at the age of 42 I am struggling with basic things like friends names, some of these people I have known for over 10 years. I struggle to remember to keep in contact with friends thinking that I have only just text them / seen them. It’s not that I don’t want to keep in contact, I just forget.


Before I got sick I had a photographic memory, I could read a policy document, ascertain the salient points and brief the rest of the management team after barely a glance. Now I am lucky if I can remember important dates on hospital correspondence. To go from that high functioning to this is distressing. It is the not knowing why it’s happening or if it is likely to get worse that bothers me.


My long-term memory seems largely unaffected, I may get hazy over exact months but I know the year. I may struggle to explain a memory due to the fact I can’t remember the words (that items, jobs are called) but on the whole it’s all still there. I can recall important dates from my life but things like my parent’s wedding anniversary had me foxed in February. I couldn’t remember what the date was and was convinced it was the day after the actual day. I had to check on the “On this day” section on Facebook to ensure I had got it right. This is something we have celebrated as a family for years but now suddenly I don’t remember? It doesn’t make any sense to me.


I spent years trying to get doctors to pin down a diagnosis. Those years spent without one were deeply frustrating. I couldn’t bare to go to the doctors about my memory issues and be told they don’t know what’s causing it. On the other hand I am driving myself insane with worry with all the things it could be. I need to stop putting it off and just make a bloody doctors appointment.
Procrastinators of the world unite…..tomorrow.

“But You Don’t Look Sick”

I’ll be honest no one has ever told me that I don’t look sick. I am normally told “you’re looking well”. I did get quite close to being told “but you don’t look sick” one day last week and it really irritated me. I wonder how someone can judge from a couple of photo’s if I look sick or not?

The problem is most people don’t know me well enough to be able to know when I am looking sick with or without makeup. They only “know” me through the internet, they only see the photographs that I am happy to post on my social media feeds. I’m hardly going to post hideous photographs of myself that will be out there for all eternity. Although to be fair over the years I have posted some shockers!  My family can spot when I am really sick a mile off and so can I but when you are naturally very pale the difference between normal and feeling terrible can be very subtle. When I am very sick the colour drains from my face or I can look quite yellowy. Unless you have seen this on a regular basis in person, it can be very difficult to spot. So it does get frustrating when people see me or photographs of me and say “you’re looking well”, when inside I feel truly dreadful.

I have decided over the last few days to start wearing makeup again in an effort to feel more human. I am fed up with the sick pasty white face staring back at me when I look in the mirror. I also posted the photo’s on my The Myasthenia Kid facebook page and my Instagram account unfortunately by doing so I have inadvertently fallen foul of those who claim you can’t look good whilst feeling like your head is going to explode.




For two days last week I had back to back migraines. Both occurred on days that I had put on makeup. Clearly my applying makeup had nothing to do with the migraines, it was just really shitty timing. By posting these photos I fell foul of the chronic illness police (CIP) as when you are sick you must never ever smile, pose for photos or look like you are enjoying yourself. It’s just not on and you’re letting the side down when you do. There is a really judgemental side to some of the people within the Chronic illness community however it isn’t solely confined to this community. It seems many online groups seem to hold their members to standards higher than are humanly possible. This is the picture which exposed me to the wrath of the CIP.




Apparently you are only allowed to look like this (photographs below) when you are chronically sick


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The thing is I don’t want to look like that all the time to fulfil society’s expectations of long term chronic illness. Sometimes I like to remind myself of the old me. The person who wouldn’t step outside the house without makeup on. Who dressed nicely instead of wearing what is comfortable, the majority of my days are spent in lounge pants. Just occasionally I like to remind myself that I can still be the old me just a massively revised version. I won’t apologise for wanting to look nice or for getting dressed. Its up to the individual how they live their lives and present themselves to the outside world. If you want to or have to wear pj’s for the rest of your life I will defend your right to do so. However I expect you to have my back also and not judge me because you don’t think I look sick enough.


Taking a few minutes to put some makeup on lifts my mood, low moods are something I suffer with on a regular basis especially when I have been enduring periods of social isolation. Its very easy to sit in judgement of someone when you haven’t walked a mile in their shoes. For days on end the only person I see is my husband or the postman. The social isolation can really play havoc with your mental state, so anything that lifts my mood in my book is a bonus. I have spent much of the last 9 years not caring about my appearance and I know now that has spoken volumes about my low mood.


There are days when I don’t have the energy to have a shower or get dressed but on the days I can I want to feel good. I shouldn’t have to justify that to anyone, let alone others within the chronic illness community. To have someone doubt the validity of my illness due to the fact that they perceived I looked well and had makeup on was a massive slap in the face. Anyone who actually really knows me, you know in the real world would tell you how deathly pale I was looking, how much my eyelids were drooping etc. Things that you wouldn’t notice because you don’t know me.


I suppose I only have myself to blame for posting photographs online for my followers to see. I have been posting many more of them this year as I have such a distorted view of myself that I need a kind of over exposure therapy to stop me focusing on all my perceived faults. It hasn’t been vanity or fishing for people to pay me compliments. I don’t believe a word anyone says when they compliment me anyway online or in the real world. My body issues have been around for many years so a few words on a screen aren’t going to change my mind. Sometimes I do dare to think I look pretty but those thoughts are fleeting because as I scrutinise the photograph I find fault with something. The faults I find have nothing to do with looking sick enough and more to do with the ridiculously high standards I hold myself to.


It’s a double edged sword having an online presence, when I post pictures of myself or my dogs I get higher viewing figures across all the platforms I use. If I didn’t “market” my blog I wouldn’t get any followers or regular readers. I am not prepared to hide away just because one person doesn’t think I look sick enough. I won’t lie it hurt to be judged in this way, this person has made an assumption based on one photo. If they’d bothered to read my blog they may have more of an understanding of what life is like for me, well the bits I am prepared to share anyway. I never thought I would hear the words or close to them “But You Don’t Look Sick” uttered by a member of the chronic illness gang and I hope I never do again.