stronger together

I hate writing blog posts when hubby as home as I never seem to get a minutes peace to do it and it’s even worse when he’s home poorly because all my energy is focused on him. Thankfully he seems to have turned a corner and is doing much better, managing to eat for the first time in a couple of days.


So this blog post will be a quick one so that everyone is caught up with everything that has been going on in the last 7 days.


We celebrated 16 years of marriage on Sunday, something we are both proud of having seen many of our friends marriages fall by the wayside over that 16 year period. Things haven’t been easy for us but we know that we are stronger together and can’t see any point in life without each other. Chronic illness is hard on relationships but somehow we have made it work and we are proud of that.


We marked our anniversary by going out with the dogs. It was my first trip up to Woodbury Common with the dogs since getting my power trike and new wheelchair. It almost didn’t happen when I realised halfway there that I had forgotten to bring the keys to switch the power trike on with me. Hubby turned the car around and we went back and got the keys. The next problem was the bike light. I hadn’t thought to attach it previously and now I was having to try to do it in complete darkness. We went out at 04:30am so there wasn’t even the dawn to help us. In the end I decided to just hold the bike light in my mouth as there was no way I wasn’t going to get out on the trike.


It was brilliant and the dogs took to it like ducks to water, running along beside me like they’d done it all their lives. Frankie loved being able to trot along behind me and the girls enjoyed running in between hubby and I. Due to the bike light issue there wasn’t much conversation but just having the freedom to get out and move under my own steam was enough. I was knackered afterwards and could barely move my arms for a few hours afterwards. It is amazing how good it feels to be tired because you’ve done something you wanted to do rather than just being exhausted by chronic illness.


I also managed to forget to take my mobile phone, which on the way home from Woodbury Common I was convinced I had managed to lose it their. Despite hubby telling me I had left it at the house, he should know he saw it twice having gone back in, to collect the keys. So there are no photo’s or video but I doubt they would have been any good due to the fact it was pitch black other than the light from hubby’s torch and the bike light. So despite it being a tiny bit of a disaster, forgotten keys, bike light not attached we did enjoy ourselves and it was a rare treat for me to get out of the house for something other than a medical appointment.


So far (touch wood, luckily my foot is touching the wooden coffee table whilst I type) I haven’t succumbed to the illness hubby has been suffering with, although in the last two days I have slept more than I have in months. I have gone back to bed each afternoon and gone straight to sleep. Each evening I have been asleep a little after 17:00. So I am obviously not right either. I am just lucky not to have had the projectile vomiting and diarrhoea that hubby has suffered with.


Unfortunately I had to cancel my neurology appointment that I was supposed to attend today (28th Sept) but hubby was not well enough to drive me for over an hour and I am sure that the hospital would have preferred that he would have stayed away. Ringing the appointments line to cancel though, I was made to feel that I should make an attempt to get there at all costs, even if that meant turning up with a husband who had sickness and diarrhoea. This is obviously in  direct contradiction to what all hospitals say to visitors / out patients which is  to stay away if you have S&D, due to the fact it’s highly contagious and many patients have suppressed immune systems. I was told that all the appointments for the next 6 weeks were booked and they would have to contact me when the next appointment became available. I am gutted obviously as I really needed to attend the appointment but other than grow a set of wings I had no way of getting there. I no longer hold a driving licence, so couldn’t drive and none of my family could help as they also had appointments that day. If I could have got there I would.


So now I have to wait for another appointment and just hope that they don’t attempt to discharge me for not attending. They are so oversubscribed with demand for appointments they have been using quite underhand tactics to tackle their waiting lists.
I do have some good news though, I have an appointment through for the National Ehlers Danlos Unit at the end of November. Which is much sooner than I thought it would be. I thought I would be waiting until after Christmas to get an appointment. At last something seems to have gone right.

This PAIN that you hold is yours

“This PAIN that you hold is yours. There is not a single PAIN quite like it. Nobody else on God’s green earth can feel this PAIN, or have the indescribable feeling of pride you will have when you overcome it. This PAIN is not your curse ; This PAIN is your PRIVILEGE” Arnold Schwarzenegger


It’s funny that since getting chronically sick nothing can quite set me off on an epic rant than a stupid inspirational Facebook quote. I probably sound like Mr Angry and I can assure you I am not. I did have a quick temper when I was younger but I have mellowed considerably with age (as I think we all do). I also don’t sit looking at things on social media to find things that annoy me. Of course I could be accused of taking the quote out of context, when Arnie said these words he was referring to the pain felt when you have given your muscles a bloody good workout.


However what do you do when it is posted out of context, no quote attribution, just a meme posted on someone’s feed? Without looking it up on the almighty Google to find the author, how are you supposed to take it? Does the poster mean all pain is good? Because I know many of you like me would beg to differ and that’s the problem when these things are displayed without context. What is inspirational to some could be considered condescending / patronising / thoughtless (please delete as applicable) to others.


I didn’t turn into the Facebook police on seeing this and tear the poster a new arsehole. Which if I am honest, depending on the day I may have done. I am in a zen like phase at the moment probably through pain, insomnia and exhaustion where I am not going with a gut reaction because I know I am probably not thinking rationally. On a bad day I may have at the very least asked the poster to explain the logic behind the post or I may have gone nuclear and not very politely asked “What the f*ck do you mean?”


The quote “No pain, No gain” can also set me off. When Jane Fonda said this she was of course talking about exercise. However this is another quote that gets misused and gets attached to all sorts of endeavours. When I was well I probably bandied around this quote as well. It isn’t until your world changes by some event be it sickness, bereavement, redundancy that a well-meaning inspirational quote can suddenly impact you in a completely different way. It can seem despite the numerous followers or friends that the poster has, that this meme has been specifically aimed at you.


I am not for censorship in any form before I get accused as such I just want to offer a perspective from the other side. A while ago I completely lost my shit with a meme that was posted by one of my friends it said


“Good things come to those who go out and fucking earn it”.


An obvious swipe at those who claim benefits but what if through circumstance you have no choice and have to claim them? Should you be made to feel ashamed that you have been made redundant / become too sick to work / became a single parent  through no fault of your own? Such is the culture in this country to blame those who have to claim benefits for not trying hard enough to change the situation you find yourself in. I love it when you challenge people on a post like that and they respond “I didn’t mean you, I meant the scroungers”. What they fail to realise is there are many people like me, in fact we outnumber the so-called scroungers but a post like that tar’s us all with the same brush.


As for the quote that inspired this blog post, you may be surprised that I agree with some of it. It is true that “This PAIN that you hold is yours.”  Pain is subjective, no two people’s pain is the same, it can’t be shared, it is your burden alone to carry. Where Arnie is suggesting the pain from a good workout, where you have pushed yourself to extremes, I am simply referring to the pain of everyday existence. I would love to feel the pain from a good workout however I won’t deliberately increase my level of pain for a short-lived endorphin rush, only for the pain inflicted to last a week rather than the one or two days from exercise.


He is also right when he says “There is not a single PAIN quite like it.” It wasn’t until I started to learn about EDS (Ehlers Danlos Syndrome for the uninitiated) that I discovered that feeling pain every hour, everyday for as long as you can remember wasn’t normal. It completely blew my mind that other people, (non EDSer’s) didn’t live with constant pain. I had been convinced from an early age that I was a moaner and complained about pain unnecessarily. That I was weak and that everyone else bore their pain uncomplainingly. To suddenly find out that I wasn’t weak, that I had been dealing with off the chart back pain for years with little more than paracetamol made me feel vindicated. It wasn’t in my head, it was real. There is no pain quite like the EDS pain I get in my joints, in my abdomen or anywhere else in my body. My pain is different even to other to other people with EDS as we all experience pain in different ways. In some ways we are like snowflakes, no one of us experiences pain the same way.


”Nobody else on God’s green earth can feel this PAIN…” again despite my rampant atheism, I agree with this statement. As I explained in the paragraph above, everyone experiences pain differently. Everyone has a different pain threshold. I am good or should I say I have a high pain threshold everywhere except my mouth. I seem to feel more pain at the dentist than I do with any other medical procedures performed elsewhere on my body. Due to the fact local anesthetics don’t work on me properly, they either don’t work well enough or I burn through them very quickly, it means the dentist surgery is a very painful and frightening place for me. Even the dentist just cleaning my teeth with cold air and water can make me scream. Yet stick a needle in the back of my head for an occipital nerve block and I will sit still without screaming my lungs out. Although I did swear a lot the first time it was done. I know of other EDSer’s that can have root canal work done without local anesthetic, they don’t bother with it because it doesn’t work. Just thinking about that makes me break out in a cold sweat and want to vomit. Even amongst EDSer’s people that are used to pain, our pain thresholds are vastly different.


Arnie and I part ways when it comes to the remainder of the quote – “or have the indescribable feeling of pride you will have when you overcome it. This PAIN is not your curse ; This PAIN is your PRIVILEGE”  I may on a rare occasion feel pride when I have pushed through the pain and have managed to enjoy myself. However in the back of my mind I know that despite the feeling that I have achieved something I will be left dealing with the consequences for possibly weeks or months afterwards. I don’t actively avoid causing myself pain, to do that I would have to wrap myself in bubble wrap and never leave my bed. I know some in the medical community believe that those suffering with EDS develop what they call avoidance behaviors. We limit our activities and because of limiting our movements we cause weaker joints, tendons, ligaments and muscles. I don’t know of any EDSer’s that avoid doing anything, we may not do certain activities because we know it makes things worse but we don’t avoid things irrationally. I know that I can’t lift things, lifting causes me horrific back pain. I don’t walk outside the house, I use a wheelchair, I do this so a) I don’t pass out and cause myself a head injury, b) so that my hips or knees don’t dislocate, c) because walking causes me extreme back pain,  d) the effort used in walking exhausts me very quickly, and  e) my balance is shocking and I tend to fall over. It’s not an avoidance behaviour it is self-preservation.


Pain the type that EDSer’s live with everyday at no point could be described as a privilege or a badge of honour. I would also beg to differ on Arnie’s description of pain not being a curse. Pain on the levels I and many others deal with on a daily basis is a curse. It stops normal life in its tracks. It causes bad temperedness, anger, loneliness, vulnerability and sometimes a sense of hopelessness. How do you describe to someone who has never suffered the levels of pain you endure that you can not look to the future because you do not have the energy to cope with this level of pain for the rest of your life. It’s not depression (although it is incredibly common in people who suffer from chronic pain) it’s a reality. When you have used every last ounce of your strength to fight to the end of another day, who could blame you for questioning if you could do this for another 40 years or more?


Pain from exercise is short-lived and self-inflicted. If you only train a couple of days a week you would have more pain-free days than those that you suffer the normal aches from exercise. If you stop exercising altogether (I am not advocating this as exercise is good for you) or adjusted your routine so you weren’t exercising quite so vigorously you wouldn’t suffer the pain that Arnie describes.


The person that posted this on social media would have been referring to his own fitness routine and not about the pain that someone suffers with when they have a chronic condition. Maybe I have become too over sensitive to things or perhaps it is because I see things differently. Obviously the impact of this was worse because I had no clue that this was someone else’s quote, so I didn’t know the context of it. It is a prime example of why author attribution is not just important to understand the context but also to give credit for the work otherwise it is just plain plagiarism.




Trike Update

On Sunday our friend came over to look at the Trike and the Wheelchair. He has resolved the issues with the handlebars and brakes. It felt a million times better after he had fixed the issues. I wasn’t feeling such intense pressure in my back when trying to steer it anymore.


On Monday the new battery came so on Tuesday I was able to have another little go on it. What a difference the new battery made, so much more power. I am a lot more confident now and no longer need Jay running alongside me to keep me calm. He also had a go on it and was freaked out with how fast it could go.


So my first outing with the dogs is planned for Sunday. This will be the first time since 2008 I have been able to join them. I am very excited. I hope I sleep Sunday night. I will be going out whilst it is still dark so we may not be able to take picture. I do have lights for the Trike so I am hoping that they serve me well. Watch this space!