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 hope….

Well it seems we are all players in some kind of dystopian society. The police ( it has been reported) going into shops and telling the store owners what they can and can’t sell. Road blocks stopping cars asking where the occupants are going. Whilst I understand some of these measures maybe necessary I do sometimes wonder if there will be long term ramifications for our civil liberties when this is all over. Possibly the free society that we have been told exists for so long, was just a fallacy. Who knows ? It is just a bloody strange time to be alive. 

I worry a lot about the adults of the future and their mental health after being exposed to these constant stress levels. No matter how good of a parent you are the kids are going to notice that things are far from normal. Exposure to high levels of the stress hormone cortisol for prolonged periods during childhood is theorised to cause damage (here) We went into this global pandemic with a vastly underfunded National Health Service, whose mental health side always played the poor relation. Now we have the very real issue that after we get through this that not only adults maybe displaying the symptoms of Post Traumatic Stress but also millions of children. All people who may be needing immediate help after this crisis is over but the help sadly won’t be available to them.

My anxiety levels have been all over the place in the last week, I know I am not the only one who is struggling to deal with the current situation. Last week gin and chocolate were my drugs of choice but they left me feeling awful and rapidly gaining weight, so I have switched back to my meal replacement as I feel so much better on this and it stops the passing out after eating nonsense. Hubby is also having to battle the demon anxiety, his is related to work and the guilt of not being there. The slightest thing is setting him off so it is necessary to attempt to fill his days with as much activity as possible so he simply doesn’t have the opportunity to fall down the Covid- 19 Rabbit hole. 

I was perfectly fine with the whole lock down situation as in all honesty it was no different to any other week in the past 12 years. At the moment with Mr Myasthenia Kid being home it just feels like he is on holiday other than his work phone is on and he is ringing staff to find out how they are doing whilst they are also on 12 weeks leave from work. However more than two weeks of this and it is going to get bizarre. I have grown very used to my own company over the last 12 years. I can usually accommodate the disruption to my routine when he is home, this 12 week period could be a test as I do like my routine. 

On Saturday a dear friend dropped off mine and hubby’s prescription medication to us. Normally I would have thrown my arms around her and given her a hug. Instead we had to observe the whole two metre distance protocol . It was weird and unnatural ( I get that it is to stop infection, it doesn’t stop it from being totally alien ). We have over the last ten years become quite a demonstrative country, friends greet each other with a hug, peck on the cheek. So to suddenly go back to not greeting my nearest and dearest this way, well it really upset me. As soon as I closed the front door I started crying and I pretty much wept on and off all day long. Which was a bit of a nightmare as I was trying to do some sewing. It was the first time in a long time that I had to acknowledge the isolation. I know I am incredibly lucky, I have someone at home with me, so I have human contact. There will be many people out there, particularly elderly people or those who have been widowed with grown up families that have no one at all and it will be like that for 12 weeks ( at least ).  Countless pieces of research have concluded that loneliness is as bad for you physically as smoking 15 cigarettes a day let alone the damage it does to you mentally. For a nice easy to read article on it click here .

A lot of people are going to be experiencing something they have never done before – complete isolation. The impact on the health service after this is all over will last years and people, well those in power need to be thinking about the nations recovery, not just financial after this. Every generation will be affected, every demographic it is another ticking time bomb waiting for us on the other side of this pandemic. There will be those dealing with the loss of one or more loved ones, those who have had OCD triggered ( obsessive compulsive disorder ) by the excessive hand washing we are all undertaking to prevent contracting or spreading this virus. Also what about the women who are due to give birth right now, will there be an increase in postpartum depression or psychosis? We already knew that the mental health resources were spread thin before this started, with a depleted exhausted work force how on earth will anybody get the help they will so desperately need when this is finally all over ( and for some their conditions will be so acute right now that they need the care immediately and it won’t be there ).

I also worry for the key workers who are holding this country together right now. Ever increasing work loads as more and more people have to self isolate for two weeks. The abuse that some of them have suffered whilst simply trying to carry out their role to help the general public. Some of them have had to make some very painful emotional choices, not to see their children / loved ones for fear of contaminating them with this virus. When they are already experiencing probably some of the toughest working conditions they have ever endured they now have the added emotional toll of having the physical contact of the ones they love removed from them. The people at home can be the very support system that keeps people going at times like these.

I have great concerns for the doctors, nurses, health care assistants, home carers who may have patients that pass away from Covid-19. I can’t imagine the toll that is being taken on those who are dealing with rooms full of Covid-19 sufferers, that will or probably have already decided who will and who won’t be placed on a ventilator. Can you even begin to imagine the damage that must do to a person? Having to tell that persons loved ones that the patient won’t survive, isn’t a suitable candidate for life support. People may think they must become immune to it over time but I don’t think they ever truly do and this maybe the tipping point for many in this field of medicine that leads them to walk away from it once this crisis is over. It maybe the same for many occupations, that people realise the emotional toll that the job has taken on them is just too high.

Many of my friends still work in retail, once a job considered by many to be low skilled is now feeding the nation. However after 2 weeks worth of abuse by the general public many are now refusing to do more than their base hours, no longer willing to do over time and be exposed to the abuse both physical and verbal for just over the minimum wage. Who can blame them? Many people are making the decision to place health particularly mental health over wealth. They can no longer put up with their treatment at the hands of others, when they are providing a vital service. Without anyone in food retail from the checkout operator, to the store cleaner, to the HGV driver to the factory worker, to the packet printer, to the farmer and many others I have failed to mention, you would’ve have gone hungry. And yet some people are still treating them like they are shit on their shoes well shame on you.

I am hopeful for great social change once this is all over. I am hoping those previously thought of as low skilled get the recognition they should by being paid a proper wage. That the homeless will remain housed and not turfed out once the crisis is resolved.

I hope that we come out of this accepting that we all will be carrying mental scars no matter how tough we are and that there will be the help available to all that need it, not just those that ask for it.

I hope that we all start to appreciate each other more and realise everyone has their part to play if we want to live in a fair and just society. That it is no longer someone else’s problem.

I hope most sincerely that we never go back to once what was normal, that we strive to make a difference every day.