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.

I’m not doing people today

***Bad language warning***

Oh the irony!

I will be completely honest I can be a cranky bitch at times, today is one of them. I can’t be bothered with people, I just want to retreat into my shell. I have zero tolerance for what I call fuckwittery, these are mainly actions fulfilled by fuckwitts. An example of fuckwittery would be asking a question where the answer is obvious (to me), attention seeking on social media through dramatic statuses / messages or just generally the person breathing the same air as me can set me off. Of course this all flies in the face of the image the chronically ill have to portray, the happy smiley brave person who battles on regardless. Devoid of any other human emotion than perfect happiness.

You won’t be surprised that these “moods” tend to come on when I am in the midst of a pain flare. You would be right if you guessed that I am in the middle of one now. I am deeply annoyed that the neuropathic pain that I have suffered with on and off for about 15 years has come back. B12 injections back in 2014 has ended this constant pain. I am up to date with my B12 medication so cannot understand why this is back other than I have possibly irritated a nerve in my back. This nerve obviously runs directly into my brain for me to be this boiling cauldron of rage currently.

On days like these I can’t be trusted to engage on social media, I can’t do small talk or act as your personal life coach, it is too emotionally draining. If you ask me a question you are likely going to get an answer you do not want to hear and that I probably, well I am 90-99% sure I don’t mean. I do try to warn people when I have entered into one of these rage filled moods. The problem is they just don’t believe me or seem to get it and keep pushing it until I either step away or tell them to stop being a fuckwitt.

Weirdly I can play nice when the red mist descends with family members and close friends, up to a point. My gp has rung when I am hell-bent on world destruction and you would have thought butter wouldn’t melt in my mouth. As soon as the call ended I was back to my dastardly plans. I can act as if all is well for several minutes before the mask begins to slip. When I am in intense pain I am just not a nice person to be around.

My husband knows the best form of defence in these situations is retreat. He knew this morning when I barely uttered three words to him, today would not be a good day. Little Miss Sunshine would not be making an appearance anytime soon. He was wise to stop himself asking me if I had taken all my pain meds as anything that was to hand may have been thrown at him. He wisely decided to take himself out for the morning as he was day off from work. Who can blame him, even I don’t want to be around me right now.

In the end I admitted defeat and went to bed. I had become so exhausted by the pain and with the constant biting my tongue so as to not rip any ones head off. Social media also had to be avoided for fear of telling a fuckwitt or someone displaying fuckwittery being told exactly what I thought. The filter that I try to use at all times had been removed which meant that anyone was fair game. It was not a day for ambiguous attention seeking statuses or dramatic messages. I was too far gone in rage and pain to act like a well-adjusted adult.

Twenty four hours have passed since the rage set in, I am back to calm almost zen like Rach, with my fuckwittery tolerance back into the normal range. The pain has lessened so peace has been restored. If you have never known neuropathic pain or a pain that wakes you from your sleep that will not go away, distracts your every thought you will probably never understand the rage that can come with chronic pain. I hope you never have to experience that kind of pain. I can understand why people snap and just give up if they have pain like that day in day out.

I am lucky pain on that level is not constant, it just flares up from time to time. I think the change in temperatures had a lot to do with it as if my legs get cold (I have suffered with this weird phenomenon since childhood) I end up with them going white and I struggle to warm them up. Warming them up usually consists of going to bed with my electric blanket on maximum for several hours. Yesterday I kept fighting going to bed, I was not completely rational. So the pain the cold had caused just grumbled on increasing by the hour.

When the pain is that intense I can become illogical and reactive to anything and anyone. Even inanimate objects can become the victim of my rage. There is no rhyme or reason as to what will set me off. People can be a major source of annoyance hence the title of the post.

I am a people person. I like helping people and being with people but it’s on my own terms. I do control who I allow into my life quite closely. I have been involved with far too many users and abusers in the past so I am intensely careful now. I have always been ok with my own company, I have had to be as I have never made friends easily. Being solitary has always been fine with me, maybe a bit too much as I can easily withdraw from social gatherings. I can do small talk etc but I am crap at cultivating friendships as the other people feel like they are always being held at arm’s length. It is funny that my husband is the same. He is quite solitary, although he has friends he would rather be home with me, than out with them.

So I can do people today, just it will be on my own terms and massive amounts of fuckwittery will not be tolerated.

It seems spell check doesn’t like the use of fuckwitt or fuckwittery. It is funny as my phones predictive text knows exactly what I am going to say!