The Fly

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

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

Bugger!

Well I didn't think I could hate 2020 anymore than I did last week and bugger me it had some more treats in store for me. Sometimes even I find it hard to believe the stunts my body pulls.

I managed to have my first migraine with a proper full blown aura in 6 years on Friday morning which takes some beating. I was reading the newspaper online when I became aware of the fact that my left eye was struggling to see the words on the screen, in fact words were missing and the screen seemed ultra bright. I knew straight away that it was probably a migraine but I thought, it has been so long. Maybe it is the sun shining through the window hitting the screen and that's why I can't see? I struggled on for a few more minutes the weird thing was when I was looking at the screen my vision was fine. Then I looked across at Mr Myasthenia Kid and half his face was missing. At that point there was no mistaking this was a good old fashioned migraine. The last one of this type I had on my 40th Birthday how's that for timing?

Hubby immediately sprang into action and got my migraine grab bag so I could take all my meds and then go back to bed. I absolutely hate the aura stage of a migraine which for me can last up to an hour before the headache begins. During that hour the visual disturbance just gets worse and worse, even with my eyes closed in a dark room. There is no escape from it and it leaves me feeling terribly disorientated. I am so grateful to have finally been prescribed sumatriptan, it is my wonder drug as it really does just halt the migraine in its tracks. Some days I feel as rough as a badgers arse, for those of you outside the UK this is what a badgers arse looks like. Other days I may feel a wee bit groggy but after a few hours I can do some bits and pieces and I am not totally wiping out a day. It really has been life changing. However the number of migraines I have been having lately has been averaging around 2 a week and I am heartily sick of having them. Of course it is now leading up to the window that always means migraine time the 18-22nd of each month. I am hoping ( god loves my optimism) that this month I wont get it but who knows? I have had more than my fair share these last 4 weeks.

So that was Friday, which was then followed by an eventful Saturday. About an hour after I got up on Saturday a nice bout of Vertigo started. The room did one spin every so often and when I walked / stumbled really anywhere it felt like I was on a boat. Thankfully I always have a stash of meds nearby for this and to be fair it has been quite a while since I had the spins. I sat down with a coffee and tried to relax and let the medication do its thing. After a while I was bored so I decided to go and sit out in the garden. Big mistake as I went arse over tit over a plant pot ( concrete ) that Mr Myasthenia Kid has so helpfully left in the middle of the patio. Had it been a normal day I may have been able to right myself but with vertigo? Not a fucking hope - apologies for the language today it is just happening. So I tumbled across the patio all the time trying to right myself without success. I realised at this point that I was going to end up crashing through the fence and falling 4ft down onto the patio in front of our shed if I didn't stop staggering, so with the fake turf on top of the gravel I aimed my dive onto that figuring it would hurt a lot less than landing on the gravel.

Gracefully I hit the deck and if you believe that, you will believe anything. Immediately I was in a world of pain, both wrists, my left shoulder, my left knee, my left buttock and all along the left side of my back.

The only reason I didn't scream obscenities out loud was because the neighbours children were playing in the garden and I didn't want to teach them anymore bad language than I had already. Most of it was aimed at Mr Myasthenia Kid for being so stupid as to leave a bloody plant pot right in front of the patio doors! When he knows my vision is a bit dodgy and I can lose the sight in one eye if my ptosis strikes and I can't open my right eye.

So all my plans of sewing etc went out the window. Instead I spent the day dosing myself up on pain killers and sitting on hot water bottles. My ankle blew up like a balloon, i had to take my slipper boots off because it got so large it was starting to feel constricted. I was bloody furious because I needn't have fallen and I hate feeling vulnerable like that. I forgot to say the minute I landed on the artificial grass Dembe came rushing over showering me in kisses checking I was ok. Initially he wouldn't let me get up until he had checked that I wasn't seriously hurt.

Sunday was spent doing crochet very slowly as my wrists were still throbbing from the fall and my left leg was elevated all day due to the swelling. I still hurt all over but at least nothing was broken. 

Thankfully the vertigo was gone by Sunday morning, my leak is still causing me problems. It is still there and some days the head pain is worse than ever. I am still attempting to pace myself by lying down every few hours but it is difficult when I get absorbed in something to remember to. I only remember when my head starts feeling like it is crushed in a vice and all screens seem to be burning the back of my retinas.

As I am the worlds worst person at pacing myself due to the fact that giving up work due to my disabilities has made me feel like I contribute nothing at all to society, I push myself constantly beyond what is sensible and then end up paying for my stupidity. I feel that everything I do has to be better than everyone else so that people don't feel sorry for me and that I don't look weak or vulnerable. The fact that the falls and faints have become much more regular occurrences is making me feel very vulnerable and it is doing a number on my mental health. I have always struggled with never ever feeling anything I do is good enough and probably also a bit of impostor syndrome (find out more here. ) People can tell me that what I have sewn or embroidered is the best thing ever, my blog could be awarded a Nobel prize for literature but I would still be waiting for one person to say that my work is shit. It is hard to live with the constant fear that people will discover that what you do is actually crap. Add in physical disabilities and you have a wonderful mixture of weird ideas running through your head, not only are you not good enough creatively but you can't even do the stuff normal people do. It makes you feel less than. Which is why I probably do push myself too hard to prove I am worthy of my place within society.

Word for this week is Bugger!

A lovely photo of Dembe to lift your spirits

I hate 2020

I hate 2020 with a passion not just for Covid-19 and not being able to see anyone but I also hate it because it has been a year of non stop health problems. It is driving me insane and I am starting to feel that "normal people" / "well people" or even people that don't know me that well are thinking that I am either a) exaggerating the impact on me or b) I'm attention seeking. I rarely say much on social media about my health due to this. I am probably more honest on Instagram than I am anywhere. But a few times i have mentioned health issues on my own account on Facebook and now I am left doubting myself, worrying that people will think awful things about me. Believe me if I wanted attention there are a million and one other ways I could get it, being sick wouldn't be the one I would use!

So this year I am struggling with Migraines, Menopause ( I am just 4 months away from officially being in it although technically I could have been in it at any point in the last 5 years, with the pill stopping my period I can only properly count from last December), bowel adhesion's, ptosis and now my absolute favourite my CSF leak is back. I've had two good, well reasonable years with minimal symptoms. My symptoms when they have shown up have been in the evening with a dull headache and light sensitivity. Suddenly out of the blue last Thursday, my head started hurting and when you have had a spinal fluid leak you know that headache there is no confusion, the pain is like nothing else.

To describe a CSF leak headache is difficult, purely because there is really nothing else in the world that feels like it other than a post lumbar puncture headache or meningitis. I am extremely lucky at the moment that it is mild, strong enough to have me lying flat but not hugging the toilet bowl waiting for death. I was on my embroidery machine when I lent forward as I moved back my brain felt like it had been slammed between two bricks . Then my eyes were struggling to cope with the LED lights on the machine. I finished up as quickly as I could and then lay down on the sofa. Slowly over the space of an hour the pain eased. Although that was a good thing, it also chilled me to the bone as only a CSF leak headache eases so quickly on lying down. So my worst fears had been confirmed.

When Jay got home from work I spoke to him about it. He replied with "well don't panic just yet you get days where it plays up more than ever". Whilst he was right , this was different, this was stronger than it has been before. I could hardly blame him for trying to be optimistic maybe I would have been had I not already suffered two migraines that week and forgotten to write a blog post. It hadn't been a good week and now it was getting worse. I replied that yes he was probably right and maybe a good nights sleep would help. I really hoped that it would be but I knew in my heart that it wouldn't.

On waking up on Friday morning, I didn't get the electric shock like feeling like I would back in 2016 when it was at it worst. I managed several hours upright before the pain started. I am afraid I pushed it and stayed up longer than I should have done. I did exactly the same on Saturday, staying upright and not resting like I should have done. I don't know why I did it. Probably I was in denial and I was determined I wasn't going to let a "little" thing like a leak get the better of me. There were things I wanted to do, I refused to go back to the dark place I was in, during 2016. 

However health problems don't work that way, when things are bad you can't pretend they aren't happening. There is no distracting yourself from the pain when you have a CSF leak as the longer you try to ignore it the worse it gets and it wont stop until you lie down. If you push it too far eve lying down won't stop it. From Friday I had increased my salt intake upping my salt tablets back to 10 a day, I had also increased my caffeine intake. Both caffeine and salt increase CSF production.

With the Menopause involved this time increasing caffeine has the added bonus of triggering hot flushes. The more caffeine I consume the worse the hot flushes are getting. Which is just fucking fantastic as caffeine is the only thing that helps quite quickly. So I spend the whole time stripping off due to getting overheated and then no sooner has the flush started I am then freezing cold. Hormones have a lot to answer for.

By Sunday I had completely blown it, my head felt like it was in a vice my eyeballs felt like they had been set on fire every time I looked at my phone, used my laptop or watched the TV. I ended up spending all day lying down either in bed or on the sofa. But as like in 2016 and 2018 ( my first re-occurrence of the leak), my back due to EDS wouldn't let me do more than 12 hours flat. I felt so down about the pain being so bad and I really felt like maybe I had been an idiot fighting against it for three days . 

Thankfully 24 hours of lying flat has got it to a better place but I am still having to lie down much more than I want to. I managed 4 hours upright on Monday and 3 hours on Tuesday before lying down.  I was much more careful on Tuesday ( today) as dog training is re-starting . With it being held in the evening which is my worst time for the head pain, I am having to rest a lot to ensure that I don't end up having to battle through the pain whilst there. 

To add a little variety into the mix at 6.50am I woke up in agony with bowel adhesion pain. I keep getting bouts of it out of no where. I ended up having to wake Jay up so he could get me a drink and a hot water bottle as I couldn't move without making the pain worse. I took some Buscopan, Oramorph and thought there would be no way I would get back to sleep and then the next thing I knew it was 9am and Dembe was snuggled up beside me. I can't work out what the hell is going on with this year. It is exhausting me with all the plot twists. If my life was a TV drama most people would be complaining it was unbelievable, no one is that unlucky....I've also lost my hospital consultant as the health authority he works for has decided that he is not allowed to see patients outside his catchment area. The hospital I used to go to before him, has no PoTs clinic at all as the consultant has retired. So basically if you are outside Plymouth you have been thrown ti the wolves.

But apparently my health needs no consultant input, as I am such an easy patient to manage! I hate 2020!

Apologies

I will hold my hands up and just say it.....sorry! Due to having a migraine Monday and again Wednesday I simply forgot to write a blog post. It briefly skipped across my brain late yesterday and I thought yep I will do that and that's as far as I got.

I'm still feeling pretty rough at 6am Thursday morning the day that this should be published. The sumatriptan works brilliantly in halting the head pain but it doesn't stop all the other stuff that comes with them. The fatigue, the hunger that you just can't satisfy, the neck and head pain - occipital neuralgia , the confusion just to name a few.

I may have just been very unlucky this week or I may have worked out that Dairy and Alcohol are two triggers. Both of which I am unhappy about. So now I am going to be on a detox diet from both, reminding myself when the craving strikes that both trigger migraines.....possibly.

Apologies I don't have more for you this week.