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

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!