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

Face masks

A few weeks ago I helped the local NHS hospital by altering some surgical masks for them that had come in but the elastic ear loops were too big. This led to a few of my friends asking if I would be making face masks or would I make them some face masks for them or their friends and family. I know the jury is out on the use of face masks. This post isn’t about that, there are research papers that are for and against the use of face masks by the general population. I think we can all agree that “home made” face masks when worn provide protection to other people more than the wearer – which is why many countries have adopted  the wearing of face masks so that they can all protect each other from Covid-19 and other nasties.

 
Initially I was very much in the camp of home made masks are bad. That they provided a false sense of security and that by having poor mask etiquette that they could cause more harm than good – if someone continually touches the front of the mask when wearing it and doesn’t wash their hands after they are capable of spreading their germs far and wide on every surface they touch. Since then there have been articles in The Guardian,  The New York Times that have shown even home made masks when constructed from the right materials can offer a level of protection that hadn’t been anticipated. Add in a filter to those masks – made of an unwoven material or a special mask filter ( you can buy at various oulets) they can provide as much protection as the surgical masks I was altering the other day. A link to the New York Times article can be found here.  The Daily Mail did an article –here The Guardians Article can be found here. So I am now very much of the opinion that yes we should all be wearing face masks of some description when out in public to help protect each other.
So for the last 20 days when physically able I have been making masks for friends and family to wear. All I have asked for is the cost of materials, being on a tight budget I can’t afford to be giving away material, elastic and pipe cleaners etc as much as I may wish too. With Mr Myasthenia kid at home, he has been able to keep Dembe entertained and do the chores I would normally push myself to do that would wipe out my energy reserves. Even with him doing that I have had a couple of days in that 3 week period where I have crashed hard just due to pushing myself too hard for too long in an effort to keep people supplied with masks and not letting anyone down. I am on an enforced break now as I have run out of elastic – I thought I had ordered enough but apparently not! I am awaiting fresh supplies. 
 
To be honest I am quite glad for the break, I am so tired mentally and physically it hasn’t been until I have stopped that I have realised how far past my reserves I have got. I always find it amazing how knackered I can be doing nothing ( but obviously I am not doing nothing as I am taking care of myself. I just judge myself way too harshly and think I should be as active as the next person even when in reality I know that is an impossibility ). There have been evenings when I have been so tired that I am unable to form a coherent sentence or stand up straight. The rest was long over due.
 
For my mask pattern I used this Youtube tutorial
 
 
Mr Myasthenia Kid has been helping me with cutting, pressing , folding pipe cleaners for the nose bands, going to the post office etc All the things that can take me more time than an able bodied person and things that I can’t do such as a post office run. Without his help and support I would never have been able to make the number of masks I have. 
 

 

 
 

 
I have been running on adrenaline for days, I knew I had. Last weekend I was supposed to be taking some time off for sewing but instead I started several other projects. Today (Tuesday  21st April ) is the first time I have sat and just done nothing. Everything is hurting and I feel zombie tired. Which is why I tend to keep pushing and pushing because I know how incapacitating the crash will be. I have always been a boom and bust merchant. Plus keeping busy stops me worrying about Covid-19 and what would happen if either of us got it. 
 
So due to my lack of elastic I have had to have a day off and it feels strange. I’m so tired though it was very clear that I needed it. I did manage to get Jay to help me highlight my hair as I am having real problems lifting my arms above my head. Within seconds of doing it I am getting awful pain in my shoulder joints. Normally I would battle on through but it is just too sore for that and I am having to put my arms down. He has done a good job and now my roots look far less obvious than they did previously.
 

 
I did have a lovely surprise this morning finding out that Natasha McCarty from Natasha Makes was sending me a gift after hearing about my run in with a pin cushion on Saturday!
 
 
 
On Saturday when I was busy making a baby bib for a friends new baby, I didn’t notice that I had knocked my pin cushion onto the floor. It had gone pin head side down leaving the sharp ends pointing up but hidden by the pin cushion. I use this particular pin cushion as it has sentimental value to me. It was my late paternal grandmothers and I use a lot of her old sewing stuff on a daily basis. It was only when I got up from my sewing machine and I removed my foot from the pedal, that I placed my foot on top of the pin cushion ( I was wearing socks only) and put all my weight through that foot to stand up. To say the air was blue would be an understatement! It took me ages to get all the pins out of my foot as there were around 20 or so on the cushion. I yelped and cried, there was blood and tears. Later when I looked at my sock I realised that the blood had come right through . 3 days on and the sole of my foot is still a little sore, not something I ever want to repeat, especially as a long time ago I stood on a darning needle and had to go to the local minor injuries unit to get it removed whilst using gas and air! I will be making the pin cushion as soon as it arrives and I can’t thank Natasha enough for that. 
 

 

 

 
 
Dembe modelling my creations from last weekend!
 
So for now I am putting my feet up and allowing myself to chill out for a few days!