What I am really thinking

I read an article in the mighty.com "Why I won't apologize for having fun while chronically ill " last week and it really struck a chord with me. It is how those who are chronically sick are judged by those who are lucky enough to have good health and lead normal lives when they post a picture of themselves on social media enjoying themselves. It was a brilliant piece and I had never seen such powerful words before describing what it’s like when you know every movement you make is being watched and judged. Granted I have been judged by those in the chronically sick world. I have had snide comments on my blog when I have posted about having a party “I wouldn’t be well enough to do that” and that kind of thing. I am going to be brutally honest and say it cuts both ways.

I will let you into a secret about what I am really thinking when I see your posts on social media. Out enjoying yourself spending time with friends and family. Living a normal life, uninterrupted by chronic illness or pain. Some days it is more than I can bear to see your happy smiling faces. Sometimes I have to just take a deep breath and switch off the computer before I go into a rant of epic proportions, using all block capital letters “you don’t realise how fucking lucky you are”. My last days, your everyday normal days, were wasted back in 2007. I wish I had known then what I know now. I want to tell you to stop moaning about your life and enjoy it.

I want to tell you about the horrific double standards there are between our worlds. You can post on social media that you are dying from a cold and sore throat. And yes I do agree they can make you feel pretty awful but I am pretty sure those things are temporary. When you post about it, I chuckle to myself, whilst my fingers itch to post something passive aggressive in response. Don’t get me wrong I do have sympathy for people, in fact since I got sick I have more sympathy. I worry more about people, people who I shouldn’t waste the energy on because clearly they no longer worry about me. If I post about being sick I can almost hear the eye rolls as I press send. The comments that you make to one another that I am attention seeking that couldn’t be any further from the truth if you tried. Sometimes I just need to vent, after 9 years of crap I think I am allowed.

Many years ago now, someone who I had believed was a friend messaged me and told me that unless I stopped moaning she would unfriend me. I made the decision for her and deleted / blocked her on reading that message. You see I am supposed to put up and shut up whilst I struggle with daily life. However you are allowed to post daily on how awful you feel when you’ve come down with a cold/ virus / temporary bout of ill-health. I don’t want you to stop posting, I just want the same courtesy extended to me. To end the double standard.

When I see you organising nights out, get togethers I do feel a stab of jealousy that you are able to do that. I also feel sad that nobody invites me anymore. I couldn’t go even if you did invite me, I am simply not well enough but the invitation would mean you hadn’t forgotten about me or written me off. I also feel angry that nobody seems to give me a second thought. It is out of sight out of mind. I have 292 friends on social media but see only one on a regular basis and I have another two friends that I see less regularly. Many of those on my friends list live in the same town but I haven’t seen them since the day I left work on the  31st May 2008. I look at you organising your nights out and think you are one accident or chronic illness away from losing all these people who you think are your friends. I then feel sorry for you because it will mean that you will experience the pain and social isolation I have. I wouldn’t want anyone else to have to go through that but they will.

This isn’t a poor me post, quite the contrary, although I do get accused of being “negative”. I know I can be a difficult bugger, be crap at keeping in contact with people. Even with good friends I am really rubbish at staying in regular contact with. It isn’t because I can’t be bothered, a lot of the time it is because I really just don’t feel I have anything to say. It’s awkward when there is nothing going on in your life other than hospital visits and ill-health. I don’t have a work life, social life etc on which I can draw upon to talk about. Once you lose those your world really shrinks and topics for conversations dry up.  So I tend to feel that there is nothing I have to contribute, so I retreat within myself.

When I see your photo’s come up in my news feed quite often I feel envious. I would love to be doing the things that you do but my body won’t let me. All you worry about in those photos are if others will think you are fat or if they like your clothes / hair. You will never know what it’s like to be judged as in “how sick you really are” by someone on your friends list looking at a photo. I rarely take photos when I am sick (sicker than normal) or if I am in hospital. I am usually too sick to be able to even think about taking a photo on those occasions. I have taken photos on my last hospital visit to brighten up my blog. Thankfully on those occasions I have had my husband there to help me and he has taken them for me.

I wish when I posted a picture on social media that all I had to think about was if I looked ok. I worry when I post that I don’t look sick enough or that maybe someone will think that because I am out of the house I am faking my illness. I have had people comment on my pictures, even the ones when I look like an extra from The Walking Dead “I wish I looked that good when I am sick”. Anyone who really knows me outside the realms of social media, knows I look sick in those photos, I do not look like I did before I became ill. I am drained by the constant need for proof some people demand. The double standards are horrific and exhausting. People will tell me not to worry about what other people think but really I don’t know anyone who wouldn’t worry. Even if I was well I would be worrying about what other people think. It's very easy to take the high moral ground and say “I don’t care what other people think, I am just going to live my life” but it is built into human nature (I am sure) that we are so preoccupied with outward appearances.

I coo over your baby photos and pictures of your pets. I love seeing the kids enjoying themselves and the animals being thoroughly spoilt. I would have to be some kind of Ebenezer Scrooge not to. I love it when you get the job, announce the baby, celebrate anniversaries and travel to far-flung places. I also feel your loss when you post about bereavement. My heart aches when I read your posts about the loss of a loved one or beloved pet. I am there with you because I live my life through you. When you have such a limited world your online friends and acquaintances become incredibly important. I am so proud of the friend who is training to become a teacher, in a complete change of career. I am so happy that one of my members of staff from when I worked is now living his dream out in San Francisco. I am over the moon that the shy quiet girl who I had an incredible bond with at work is now training to be a nurse. I am in awe of those raising a family single-handedly. There are just so many of you who do not realise lift me up on a regular basis. I may not tell you but I am amazed at your courage to grab life by the balls and live it.

Somedays I may feel sad and be jealous of the lives you have. You may drive me slightly around the bend with your whingeing. I may want to strangle you on occasion due to yet another cryptic passive aggressive post but arguments on Facebook are a hilarious spectator sport. So what I am really thinking is…………………………………… Well it changes on any given day.

P.S Happy 1st Birthday to my nephew Elijah xxxx

Pulling Teeth

This morning has been mainly spent engaging in what would be called avoidance behaviours. I have been doing anything and everything to avoid putting pen to paper or in my case, speech to text. Blog writing can be hard especially when there is a myriad of things happening in your life that leave you exhausted beyond belief. To put it bluntly currently my state of health can best be described as crap but more about that later.

Sometimes blog post writing can be like pulling teeth. I have spent a couple of hours on a post that I had planned to publish tomorrow but it feels wrong. It doesn’t feel right, I don't really know why and I am rapidly approaching a deadline. The things that are wrong are a) too tired to continue,  b) I have written a lot but seem to have got nowhere and c) I have tried editing it down but it’s still not right. That is the way it goes sometimes so you will have to accept my sincere apologies for this sorry excuse of a blog post.

I had promised well not promised, just said that I would write about my last caffeine infusion this week but it’s just not happening. I am sorry to say that the second infusion hasn’t worked as well as the first one. Even in the hours after the infusion where I should have been headache free, I wasn’t. I would have around 15-30 minutes headache free and then get stabbing pains on the top of my head. Initially I put it down to being over tired due to the travel, stress of going to hospital and meeting up with Sharon one of my oldest and closest friends. However the next day it became crystal clear that the second infusion wasn’t going to work as well as the first.

I spent a couple of days completely worn out by it all, so much of my time was spent lying down anyway as I was too tired to do anything else. So initially I only had pain after sitting up for an hour. The first infusion had allowed me to be upright for much longer for many days after. It is very hard not to become weighed down by it all. I have spent a lot of the last week in quite a low mood which wasn’t helped by the fact the only person I saw for over 7 days was my husband and the engineer who came to fix our sofa. It is sad when you get excited at the prospect of a visit from an engineer.

Since I wrote my blog post last week I have had a urinary tract infection which needed treatment with antibiotics, both the infection and the antibiotics made me feel quite sick/ ill. The once the infection cleared I was knocked sideways with bowel adhesion pain. I have had to do a fluid only fast today as it has become painful to both eat and drink. By doing the fast I am hoping that the pain will settle down and allow me to escape having to be admitted to hospital. The adhesion pain is draining and it doesn’t help that despite the high level of pain I am bloody starving. I hate having to fast as I am a hungry person, I rarely ever lose my appetite. So you know things are bad when I am willingly forgoing food.

What has cheered me up over the last week was Jay (hubby or Mr Myasthenia Kid) finishing painting our garden fence. It is a funny story how this came about. A neighbour of ours has put her house up for sale, me being extremely nosy and liking being able to see how other people have decorated the same house took the virtual tour of her property. The tour also included the garden and I saw that her fence panels were painted a lovely blue / green. I showed Jay who was equally enamoured with the colour. I don’t know the lady, despite living here for 13 years and her only being 3 doors up from me. A sad state of affairs really but as they say people really don’t know their neighbours anymore. So I googled Fence Paint Colours and her colour was the first one to come up. Obviously it is very popular. If I hadn’t taken the virtual tour Jay would never have had to paint the fence. We do have to say a big thank you to our neighbours on both sides who lent a hand.

If you are interested to know what the colour and brand of paint is, it’s Cuprinol Garden Shades in Seagrass. I just need to point out that I am not receiving any remuneration for mentioning this in the blog post, it’s just whenever I have posted pictures of the fence on social media everyone has been asking what the colour is.

The disappointment of the caffeine infusion not working as well has probably coloured my view of how effective it has been. I have only had a couple of days in the last week when I have had to take to my bed all day. I haven’t had any of the days that I had prior to the first infusion where I have spent hours hugging the toilet bowl due to the vomiting the head pain induces. I am however back to waking up with head pain that increases in severity the longer I am upright. It is gutting when something has worked so well previously and you felt almost human again.

Currently all I want to do is this

Willow

The Things You Do For Love

So last week was crazy busy, despite Jay and I stating we were going to have a lazy week whilst he was on holiday.

As I wrote last week I had a surprise visit to hospital on the Friday for a caffeine infusion which I will write about more next week as the star of this week’s blog post has to be my husband Jay.

Back in May 2016 I set up a gofundme page to raise money to buy a new wheelchair and a power trike attachment so I could go off-road and go out with my dogs on Woodbury Common, something I have been unable to do since 2008. As hubby and I were chatting one day trying to think up ways we could raise money, as like most people we don’t have a spare £5,000 lying around, I suggested that he should get his back waxed. He agreed immediately, now this is the man who needed gas and air for his travel vaccinations, who screamed the place down many years ago when he had his legs waxed for charity, so I was a little shocked when he said yes.

Hubby is hairy and it has never bothered me. If you had asked me before we met if I liked hairy men I would have said no. To be honest the only time his hair has bothered me is when it's left all over the shower tray every morning looking like we have showered a black Labrador. It wasn’t until I saw the first video clip I realised how hairy he is, I suppose over 20 years I have just got used to it.

Within a few days hubby had it all organised and the sponsorship money was flooding in. Through doing this he has raised over £1100 I am so proud of him not just because of how much money he has raised but the pain he went through doing it.

Imogen, a very dear friend of ours videoed the back waxing for us. Unfortunately the complete version of the video is only available on my The Myasthenia Kid Facebook Page however we have managed to get the following videos onto YouTube. I also need to say a very big thank you to Abbie Wilson who did the back waxing in her own time and free of charge. That was so very generous of you Abbie and we really appreciate it. I need to mention the language gets a little fruity during the waxing so if easily offended or you have children present don't watch with the volume turned up!

I need to do a little correction here, we are not a charity this is simply a go fund me campaign. Apologies for hubby getting it wrong but he was very nervous!

The first strip coming off

It’s not too late to donate, we have set ourselves the challenge of a year to raise the money. If you would like to donate please use this link gofundme.

The things you do for love and a decent wheelchair, what next?

He has told me skydiving and abseiling are definitely out.