Month: July 2020

The Fly

/ RachelMorrisMcGeethemyastheniakid / Leave a comment

Well it has been pretty hellish of late health wise. Last week I managed to beat my personal best and have three migraines with aura within a week. Each time as they happened I was using a screen. I had noticed for the last few weeks that I was really struggling with a fabric I had been working with a tiny red and white check. Out of nowhere I had noticed it had started strobe – looking like it was stripey, instead of checked to the naked eye. I should have realised my sudden increased visual sensitivity was a warning sign of things to come.

For a really good visual representation of the sort of things I see when having a migraine aura this website is really good – https://www.migraineagain.com/how-to-know-if-you-have-migraine-with-aura/ It is the closest thing I have ever seen that would explain the zig zag lines in primary colours and the blind spots I develop in my vision. I tend to develop the blind spots first before the zig zags come on. My auras last for around 45 minutes to an hour and then the pain will start. Thankfully with the introduction of sumatriptan by the time the aura is coming to an end the sumatriptan kicks in. On the last three occasions it hasn’t got rid of the headache entirely but even knocking it down to a bad headache is good enough for me.

Over the last week thanks to a lot of research I have found that people with migraine are very visually sensitive. It is something I have always known but it makes you feel better when it is confirmed in writing. I know as a kid there were shops that I really disliked going into as I knew the chances of them causing a migraine were high. There used to be a shop called C&A, which I loved and loathed in equal measure. Loved because I could get decent clothes at a reasonable price, loathed because of the patterned carpet, which would trigger a migraine or make me feel like I was suffering with a migraine aura. I don’t remember much about the pattern, C&A has been gone from the UK for about 20 years ( so I am showing my age) .To find out more about C&A click }here{.

Medical papers have been written on the subject that Migraneurs are sensitive to light, sound, smell etc. One of the easier papers to understand should you wish to read further information on the subject  you can find {here}.

I have also always had a problem with stripes, it is the width of the stripe that is the issue. Thick bold stripes are fine they don’t do anything to me however thin stripes and lots of them banded close together make me feel sick. Not because they are ugly or anything like that, its the gymnastics they cause my eyes and brain to do trying to keep up with their constantly changing pattern, especially if they are on clothing. As the person moves the fabric will move, causing a strobe effect that my eyes really struggle to deal with . 

Colours can also cause me issues, especially ones that essentially clash like olive green and turquoise – a Tula Pink Fabric, she does it in dots and a stripe. I love Tula Pink designs but I have ti limit my exposure to those fabrics as again they can make me feel overloaded visually. It is a really weird sensation to describe, I can feel light headed, sweaty and a bit panicked with them. I don’t know if it id the fear of nearly 40 years of migraines or the feeling of not being able to see properly that causes me to freak out.

Since my migraines decided to ramp up this year, I have been keeping a food diary in case there was something I was eating or drinking that was triggering them. I would think I had found a trigger, so gin and dairy. Only to try them again at a later date and no migraine would happen. Nothing made sense and there was no food or drink that I was having in the 24-48 hours that proceeded a migraine that I wasn’t having on any of the other days. I was beginning to lose hope that I was ever going to find out what could possibly be causing my migraines, when I had an a-ha moment. What if the trigger possibly wasn’t what I was eating or drinking but something I was doing. On each occasion last week I was either using my mobile phone or chromebook when I suddenly would lose part of the screen and the screen would also appear to be too bright, burning the back of my eyes. So I did what we all do these days and Googled ” do screens trigger migraines”.

The first article I came cross was this one from Migraineagain.com – How to avoid a Computer Headache.  As I was reading I learned a lot, something when you have had migraines for nearly 40 years, can surprise you. What I discovered in this article was yes Migraines can be triggered by screens…..( so maybe I have found one trigger ) and that I didn’t have to abandon technology due to it. I found out there were special Migraine glasses I could wear that could help me. The links in the article are only any good if you are in the USA. You can get blue light filters or glasses with blue light filters in, however migraineurs are not just triggered by blue light but also red light and light on the frequencies F1 and F4. So whilst blue light filters may help a little ( they may help others a lot) they wont stop the other light frequencies that are on the spectrum that trigger migraines.

In the UK there is a company called Migralens and their products are approved by Migraine Action a UK Charity for migraine sufferers. Now I need to state for the record I am not being paid to mention these glasses, I haven’t received anything for free. I am literally sharing them because they have helped me so much since they arrived on Sunday afternoon. You can buy them as non prescription lenses or prescription lenses. The Migralens site is HERE. You can also purchase them through Amazon as I did as I was so desperate for them to arrive, although they are more expensive on there.

The lenses are very dark green and give everything a bit of a weird colour. I was using my embroidery machine yesterday and the green button to start the machine looked amber! Which threw me a couple of times making me think there was something wrong with the machine! I put my glasses on as soon as they arrived on Sunday and the relief was immediate. I had noticed this summer I was really struggling with glare from objects that were bouncing sunlight at me, going through a sunshine dappled road was causing me not to be able to see for a few minutes ( thank goodness I no longer drive), plus as I said earlier fabric I have been using for the last 6 months was now suddenly causing me to feel queasy and was making strange patterns. On putting the glasses on the pain I feel in my eyes pretty much from the minute they open subsided. I always thought that pain was dry eyes but no it is how bad my light sensitivity has become. I used my phone to check Facebook and my eyes didn’t hurt and the screen didn’t become wavy etc where my eyes just couldn’t cope with it. I used my chromebook and my eyes didn’t hurt. Within an hour the low grade headache I had since Fridays migraine melted away.

I wont lie it is a pain in the arse having to wear glasses ( for a non glasses wearing person other than weak reading glasses ) every time I use anything with a screen or lights. But the fact I don’t have a headache more than compensates. This blog has been written whilst wearing them. I plan to buy another pair next month so that I have two just in case I damage one . They did make me laugh when I took a selfie wearing them

It immediately reminded me of The Fly

Showing my age!

In a cruel twist of fate I managed to come down with a migraine as I was writing this. Well at least I had 4 days without one!

You don’t look in pain

/ RachelMorrisMcGeethemyastheniakid / Leave a comment

A week or so ago a Facebook buddy of mine posted a quote on  her news-feed and it resonated with me. I expect it resonated with a lot of people because many of the people I am friends with online are people I have made friends with through Chronic illness groups. The thing we all have in common and a lot of the time we are not believed when we say we are in pain every single day be it through Ehlers Danlos Syndrome, Fibromyalgia, Migraine, Arthritis, adhesion pain etc etc. There will be people in your own lives that you have no idea deal with pain every day all day because they have been conditioned not to speak about it or just don’t want to come across like they are looking for attention or sympathy.

This was the quote my friend posted;

I have spent some time this morning trying to locate the source of the quote so I can give an attribution to the author and unfortunately I can’t find it. I have read some quite interesting pieces of information from blog posts, medical sites and chronic pain forums I will post some links at the end of the post.

Many people with chronic pain are disbelieved , especially when there is no “evidence” of what is causing the pain or the images from scans or x-rays don’t correspond to the level of pain people are stating they are enduring. I had the same when I was suffering from terrible pains in my knees with my right knee being the worst. I was getting sharp pain under the knee caps when going up steps and suddenly out of nowhere when standing / walking.  I was taking morphine so it was accepted by both me and my gp that it must be bad whatever it was for me to be feeling it…when the x-rays came back it showed really mild arthritis. Due to it’s location I couldn’t be offered an injection into the joint. It was something I would just have to put up with. He suggested some exercises to help, which mainly consisted of doing plie’s. After I did one in front of him and my knee caps made a sounded like a shotgun being fired he helpfully suggested that I avoided those! I still get the pain along with lots of others courtesy of my friend EDS, Migraines, Arthritis, Bowel Adhesions, Spondylisthesis etc etc

It’s not just the medical profession that have difficulty accepting that someone is in pain. So many times I have been involved in conversations where people have made judgements about others saying “well it can’t be that bad they manage to do X.Y. Z.” It is even sadder when it is people within the same community who know what it is like living with a chronic health condition and the pain that comes with that. Many of us do things that we enjoy as a kind of pain relief. When my Spondylisthesis shifted a few weeks ago and left me in excruciating pain, that was waking me at night, I still crocheted, used my sewing machine and my embroidery machine. I ensured I kept to strict time limits do never sitting for more than 15 minutes without moving and ensuring I had adequate pain relief onboard. If I hadn’t have been able to distract myself through those activities I would have had no relief at all. Yet some may have been quick to judge saying ” well it can’t be that bad she is still sewing etc”. I can assure you it was. There were times I would sew with tears rolling down my face, or feeling sick because the pain was so intense I was struggling to stand.

If the pain is that bad why don’t you lie down?? Was something I was asked. Well I would love to lie down but my back would never put up with me taking to my bed for days at a time as much as I would love to. My back manages about 8-9 hours of being in bed and then it gets so painful and stiff that lying in bed becomes part of the problem, I am the same lying on the sofa. My back hates being immobile, everything seizes up. It was the biggest issue I had when I needed to do strict bed rest when my CSF leak was at it’s worst in 2016. I just couldn’t do it without being in agony but then sitting up made me feel like my head was exploding. On those days I ended up hugging the toilet bowl as the pain was making me vomit.

The quote is true people with chronic unrelenting pain do operate at levels of pain that would floor most other people. I never know what level my pain will be at from hour to hour. Today I am in a lot of pain, I have no idea why. I haven’t done anything to cause that pain. My pain is in my hands…great when you are typing, my hips, lower back, knees and ankles. I have had a hot shower, hot water bottle and taken pain relief but nothing is touching it. The pain doesn’t stop, it is at about a 6/10 for me. I will carry on with my day as normal being aware of that pain despite doing other things. For pain to actually stop me doing something it has to be an 8/10 or above. Last night I nearly didn’t go to dog training as my bowel adhesion’s started up after eating dinner. I have been having problems with my adhesion’s a lot the last few weeks. I managed to get the pain under control with Buscopan and a huge pint full of peppermint tea. I was lucky sometimes it refuses to settle and just gets worse and worse until I am on the verge of passing out. Then it just tails off as quickly as it started. 

Adhesion pain is one of the pains that will immediately stop me doing something. It feels like someone is attempting to remove my intestines through my belly button. It is a sharp pain the comes in waves. So the respite can be seconds or minutes before the next wave hits. Some days it starts as soon as I take my medication in the morning and everything I eat or drink that day will be followed by the pain. Other times I will be fine all day then in the evening I will end up screaming in pain due to it starting up out of nowhere. I can go months without experiencing this pain and yet at other times everything I eat and drink for weeks on end is an ordeal. I am in one of those phases at the moment. Yet if you were to look at my Myasthenia Kid page on Facebook or my personal news feed there would be no mention of it. Because although it really fucking hurts it is a pain I have lived with since I was about 5 years old. 

What really upsets me when I am struggling with adhesion pain is when people who should really know better say something like “are you sure it’s not trapped wind as that can be painful”…my standard reply to that is “how many people do you know have fainted from trapped wind?” or ” how many people have ended up having major surgery due to adhesion pain?” That usually shuts them up. But it is incredibly hurtful to anyone suffering pain to be so casually dismissed as having something that yes can cause pain offered up as an explanation with the implied suggestion that you are making a meal of things or are a drama queen. I do often wonder why people do that, if someone broke their leg and were in pain I wouldn’t suggest they had stubbed their toe. Just because you can’t see my pain or have never felt it, doesn’t mean it doesn’t exist.

Also two people can have the same condition, it doesn’t mean their levels of pain are the same or that the condition will follow the same path. Everyone’s journey is different. Some people have a high pain tolerance and what they can endure would have others out cold. I know people in the EDS community that have endured root canal treatment without any anaesthesia because it doesn’t work on them. That has me sweating just thinking about it. I like to think I have a reasonably high pain threshold except when it comes to my mouth. I have gone through the removal of the side of my big toe nail without pain relief, I have had a lumbar puncture when my local anaesthetic has worn off and pretended it hadn’t. I have run company inductions ( when I was working ) with adhesion pain that had me crying in the toilets every time I left the room when a video was being played. I looked fine when I was doing the induction even though I felt as if I was going to faint.

I get sick and tired with the majority of peoples idea that pain somehow shows on a persons face. I have seen summing up by judges in disability cases saying that the person is showing no signs of pain or they have been seen laughing and joking so the pain can’t be that bad. Up until my pain hits a 8 you will find me cracking jokes, after that I start getting cranky and grumpy. When my mood changes with pain you know it has got bad.

We need as a society to stop judging people, stop trying to think because we have had that medical complaint that we know all about it, everyone experiences things differently. By minimising it or not believing them we take away their voice. As it is so many of us are already battling the medical profession to take our pain seriously, we don’t need to be battling friends and family as well.

Even when I am in horrendous pain he makes me smile.

https://www.health.harvard.edu/blog/chronic-pain-the-invisible-disability-2017042811360

http://nationalpainreport.com/future-doctors-unprepared-manage-pain-8822008.html