Entertaining and the aftermath

On Wednesday 20th January I held a Body Shop at Home Party for a few friends. It was a way of getting all the girls together and have a catch up whilst pouring over beauty products. It was held for entirely selfish reasons I needed some company badly due to my hatred of the month of January.

Yes I know I have said in the past I hate October with a passion but January also is a horrible month for me. December is usually quite social with family and friends visiting during the month but once Christmas and the New Year has passed the only person I will see for weeks on end is hubby. And although this is utterly delightful, talking to the same person in isolation does nothing for my emotional well-being.

January is the month when I first became sick, well sicker to the point that I could not sit up and take notice. This was the month back in 2007 when I developed ptosis and was wrongly diagnosed with Bell’s Palsy, it wasn’t until August that year that I got the tentative diagnosis of Myasthenia Gravis, which was then removed in 2009/10. This month is an anniversary month and always makes me feel quite low, next year it will hit double figures and I have no idea how I will wrap my head around it.

January is also the month my husband had his horrific car crash. He was hit by a drunk driver in a stolen car. Luckily he walked away with injuries that didn’t need hospitalisation. However his recovery took months, he had problems with his knees which had been rammed against the steering column and his lower spine, just from the force with which he was catapulted forward. He also had psychological issues with driving, losing his confidence and panicking whenever he saw oncoming headlights. The dogs were in the car at the time of the accident, they were covered in glass where a few of the windows had shattered all over them. Mollie has never got over the crash and shows signs of stress every time we travel along the road where it happened.

So as you can see January is quite a dramatic month for me, without adding in nearly losing Willow to Pyometra in 2014 and breast cancer in 2015. Her huge operation for her lipoma and cyst removal took place in December but that has already necessitated a couple more trips to the vets as she started to reject her dissolvable stitches ( which are taking an age to dissolve ) and her wounds opened back up.

So to get me out of my navel gazing funk I decided to hold the Body Shop Party and get to meet up with friends who I hadn’t seen in a while. There were only a few that could make it due to work commitments and illness. However this didn’t dampen the evening and actually made it a whole lot easier as it meant there was space for everyone and that emergency chairs weren’t needed. I had already ploughed my way through the catalogue and decided on what I was getting before the evening, so I didn’t do a lot of product testing. I mainly exercised my jaw with yapping to everyone who would sit and listen. I know that I can be full on when I haven’t had any company for a while. I talk at record speed and it can be hard to keep up with me. I tried very hard to rein it in. All that said it was still a cracking evening.

The party didn’t finish until 10:30pm on a normal night I would have already been asleep since around 8pm, yes I know I am just so rock and roll! So by the time I locked the front door and made my way up to bed I was desperate for sleep. My back had been playing up all week and all day I had been unable to bend without shooting pains down my leg, so by the time I got to bed I was in agony. Which I had been able to successfully hide all evening. Needless to say I went straight to sleep, normally after an evening like that I would be awake for hours, not last night. I didn’t wake up until 10:20am so that alone speaks volumes regarding how tired I was, when a normal night is 4-6 hours.

Thursday 21st January:

This morning I feel like I downed 20 pints, my balance is off, my eyes are dry, I am shaking, have a splitting headache and I am in a lot of pain. All I drank last night was diet ginger beer, my favourite soft drink, hardly the reason why I feel hung over today. This is the side of things very few people see. I am beyond exhausted, despite not doing anything other than sitting on the sofa talking. It seems crazy that my body needs to punish me so severely for a few hours of socialising. I love seeing people but I hate the recovery phase after. No amount of pain medication will get on top of the pain and due to sleeping in I missed my normal medication taking time of 8am so I was over two hours late taking them. The pain was what had woken me up.

There isn’t part of my body that doesn’t hurt, it’s a day I would describe as feeling trampled by a horse. I know I enjoyed last night but I am so exhausted I don’t remember much of it. Like a drunks amnesia the memories escape me at the moment. The evening was needed but I am beginning to wonder that the price may have been on the high side.

Friday 22nd January:

Yesterday despite my best efforts was a write off. I managed the sum total of three hours outside of my bed. The pain was too much the fatigue all-consuming and I just couldn’t function. My kidneys were also hurting from not consuming my normal amount of fluids (6-8 litres) it took all day of drinking copious amounts of fluid to get them to stop screaming at me. I got worse as the day went on, every time I attempted to get out of bed because boredom had set in (I really am the worst patient ever) my legs gave way. I ended up walking like a newborn foal. I get bored very easily, I was so tired that watching TV wasn’t an option I wouldn’t have been able to follow what was going on for more than a few minutes, reading, which I am doing a lot of recently wasn’t an option either as my eyes simply refused to focus all day. Even with my reading glasses on all I could make out were blurred words on the page. When I am tired to this point my eyesight just goes and all objects, faces etc are a blur. It is really incapacitating. EDS affects the eyes because it is muscles that are used to contract the lense and focus the sight. Tiredness means the muscles just don’t respond.

The term tiredness, fatigue exhaustion don’t really cover it. For those of you who aren’t ill, you can’t probably imagine what I am talking about. I am talking about a level of fatigue where your body just refuses to function. Walking to the toilet becomes an endurance sport, sitting up, holding a conversation is much the same. All you can do is lie down and sleep if you are lucky.

Today I am feeling much better, I am still shockingly tired and wracked with pain but I can function. I will have to continue to take it relatively easy for a few days and I won’t resume my normal levels of shittiness until next week. I can cope with that though as one evening with friends has been the tonic I needed. My spirits are lifted and after all there are only a few days left of this shitty month.

I am also being treated to a visit from a close friend this afternoon. Whilst the timing is a bit silly and will knock back my recovery from Wednesday night, I want to be like a “normal” person. To enjoy life and not limp from one social engagement to the next. Sometimes mental health has to take precedence over physical health. Without good mental health my body will not recover, I will not be able to push through or cope with the levels of pain I endure. I am a firm believer that the body needs to be treated as a whole, mental and physical health should be seen as one. Now I am feeling better mentally after the blip late last year my overall health feels much more in control.

A big thank you needs to go to those of my friends who attended the gathering on Wednesday night. To me it was so much more than just a get together, it was a life line.

Sleep and chronic pain part one

I’ve decided to split this blog topic up into sections as its quite a large topic, also im currently not doing well so im having to limit my screen time quite substantially.

Here in the UK there never seems to be a week that goes by without an article in the media about the importance of sleep, good sleep hygiene and strange individuals who seem to be able to function on five hours or less sleep a night.

As you can tell from that last remark I’m not one of those individuals! I need at least seven hours to function the next day or more if I can possibly get it. Yet here I am at 540am writing a blog post having been awake since 330am. Oh the joys of chronic pain.

Before my illness made its way into my daily life and I just thought I suffered with a bad back and occasional low blood pressure, sleep was never a major issue. I could count on one hand the number of times from age 16 to 33 years old when I suffered from insomnia. As a teenager it wasn’t uncommon for me to be out partying until 2am grabbing a few hours sleep and then working a full 9 hour day as a shop assistant. I didn’t seem to need masses of sleep. I could go to bed late and wake up early feeling as fresh as a daisy.

In 2007 all that changed. In January 2007 I developed ptosis and all the medical opinions I sought told me I had an atypical presentation of Bells Palsy ( we now know that I’ve never had Bells Palsy and medical opinion is divided on the cause of my ptosis.) To treat the Bells Palsy I was prescribed high dose steroids for seven days. On taking them I had immediate side effect of steroid induced insomnia. I could have coped with the insomnia had it not been for the fact without sleep I had no escape from the unrelenting muscle pain in my forehead caused by the muscles sagging to the right by the ptosis. I would spend the night with a hot water bottle clamped to my forehead trying to get some relief. I had no pain medication other than paramol which is paracetamol and codiene which can be bought over the counter. It did nothing to dull the pain of what felt like the muscles in my forehead were being torn apart.

For those of you who don’t know what ptosis is or looks like I’ve posted these pictures.

The picture on the bottom shows just a very slight ( for me ) ptosis the top picture shows both eyes trying to close the left eyebrow is desperately trying to keep the left eye open. You can see the strain my forehead is under.
From January 2007 I would never know what a “decent” nights sleep would feel like again. Sometimes I feel angry about this, especially when people ( non sick) say “I feel so tired, I didn’t sleep well last night.” Or when people who don’t understand that I haven’t slept properly for seven years take the piss out of my night time routines or say “your so lucky to have slept 13 hours”. They don’t seem to realise that I may have been “asleep” 13 hours but it wasn’t a refreshing 13 hours. It was 13 hours broken up by thirteen trips to empty my bladder as I drink excessively over night. By excessively I mean at least 3 litres of fluid, if I don’t drink overnight I end up dehydrated in the morning which exacerbates my autonomic nervous system problems. On top of all those bathroom trips I will have also been woken by breakthrough pain. Since 2007 I haven’t known a night without unbroken sleep.
When researching this topic of chronic pain and sleep what became apparent is the link between poor quality / unrefreshing  sleep and the increase in pain the following day. Its a cycle that repeats itself over and over. There is no simple cure to this problem.
Some people might think / suggest extra pain medications to deal with breakthrough pain. Unfortunately increasing pain medications comes with its own problems. Increasing an opiate like morphine can have the side effect of causing insomnia. So chronic pain sufferers often have the choice between broken sleep or no sleep due to increased medication. I find increasing my morphine at night causes extremely vivid dreams, I wake up feeling more exhausted than I did the night before. The dreams seem so real that I can wake up confused as to whether or not it was a dream or a memory. The confusion can last a few minutes to a few days. One dream was so vivid that I believed for a day or so that I had served in the Royal Navy. I’ve never served in the Navy or abseiled from a helicopter. In fact I’m so scared of heights I can’t climb a ladder so abseiling from a helicopter would never have happened!
Weirdly though for someone like me breakthrough night time pain serves a useful purpose. By waking me from sleep it forces me to move. With EDS my body can lock up and stick in position if I don’t move frequently. Pain can serve a useful purpose even if it is a horrible thing to go through. Sleeping solidly for eight hours ( oh I wish) ok let’s be realistic and say 1-2 hours in one position will cause me to have limited mobility for several hours after I wake up. My joints get stiff and painful and it can take a while for me to get that pain under control and get a full range of movement back into those joints.¬†
However constant micro arousals which cause you to wake throughout the night makes the quality of your sleep decline. I’ve found with EDS that it gives with one hand ( increased flexibility, young looking) and takes with the other (pain and poor sleep).
More next time ….