What I am really thinking

I read an article in The mighty.com “Why I won’t apologize for having fun while chronically ill“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


The second Caffeine Infusion

Three weeks ago (on Friday) I made the hours trek to hospital to have my second caffeine infusion. I had rung the consultant’s secretary on the Tuesday of that week and received a phone call the following day asking if I could get there for Thursday. Unfortunately we needed to arrange childcare, well really a dog sitter as we don’t have kids. Luckily the registrar who I see on behalf of the consultant has a dog of his own who doesn’t like being left so he doesn’t have a hissy fit when I say 24 hours notice isn’t enough. Thankfully I have good friends who are able to step into the breech and my parents have told me, that now dad is retired he is more than happy to ferry me to and from these appointments.


Dog sitter organised (thank you Imogen) I could make the Friday appointment at the hospital at it’s Ambulatory care ward. As I grew up in this town many of my oldest friends live there, I don’t often get a chance to catch up with them as since I have got sick I have become a very poor traveller. Just ten minutes in the car is enough to make me travel sick and I seem to suffer with excessive levels of fatigue for days after a trip of more than 20 minutes. I had posted on my own social media page that I would be travelling to my hometown and one of my oldest, closest friends said she would meet me at the hospital. She would sit with me whilst I had the infusion and we could have a catch up. Hardly Costa Coffee but when you are chronically sick you will take any opportunity presented to you.


I get very anxious with any medical appointment. Until I got sick back in 2007 medical appointments other than smear tests (pap smears) never bothered me at all. Now they fill me with dread as you never really know how you are going to be treated. With a normal routine appointment, including a gp’s appointment I can suffer nights of insomnia leading up to it. With just 48 hours notice my anxiety levels hit the roof, I barely slept and kept going over worst case scenarios in my head. I have gone to appointments in the past only to have the rug pulled out from underneath me during it. I have been left feeling disbelieved and disrespected by medical professionals because they were out of their depth, they didn’t understand so therefore I must be making the whole thing up. Then once a psychological label has been applied to you it is very difficult to get any new medical professionals to believe what you tell them, even when it is backed up with test results. Even though my new doctors had diagnosed a CSF Leak I was still terrified that they would turn around and take that diagnosis away without warning.


The only thing that kept me going was the thought that I would see my friend Sharon, who I hadn’t seen properly for around 18 years. We keep in regular contact via text messages and Facebook. I might even go as far as saying I was almost looking forward to my trip to hospital for the first time in my life.


The appointment was for midday and we got there with time to spare. We eventually managed to find Ambulatory Care, through the maze of corridors. The staff were waiting for us and many were extremely curious as to why I was having a Caffeine Infusion, for what they thought was a simple headache. I wish it was a simple headache as perhaps it might have gone away by now. It did annoy me that they diminished my condition to that of a headache, now I know headaches can be awful. Those of you who suffer from migraines will probably feel the same, it’s not a headache however unless you have suffered from a migraine or a cerebrospinal fluid leak you have no understanding of what it’s like you can hazard a guess. In the same way I can guess how painful a broken leg is but having never had one (touch wood that I haven’t just jinxed myself) I can only imagine.


The curiosity from the medical staff was due for two reasons firstly caffeine infusions don’t happen very often, so the majority of them had never met a patient who has had one and secondly standard advice for headaches is to avoid caffeine to see if that is what is triggering them. As usual I was a medical oddity but over the last nine years it is something I have become accustom to.


Most people with EDS will tell you how difficult it is for medical staff to get a cannula into them. I was asked never to attend blood donation sessions after the highly experienced phlebotomist being unable to draw blood after trying for 45 minutes. Now if this lady spends all day every day sticking needles into people and she can’t do it you know that you have what is termed in medical circles as “shitty veins”. So I can go from jovial charmer to bitch from hell within 60 seconds if medical staff refuse to listen to me when I tell them I have awful veins and where the best vein is. I don’t understand why if a patient is telling you something you would choose to ignore them. I am actually trying to make your job easier. So you can guess what happened, the student nurse and the health care assistant decided they knew better than me and ignored my advice.


I am now the proud owner of this bruise which is now black after two weeks, at three week’s it is still quite bad but now more yellow.




I had strongly put across my instructions to the student nurse that she could have one go and that she wasn’t to dig around inside my arm because it hurts. She looked totally freaked out but decided she knew better than me and started in the crook of my left arm. An area that no blood has been able to be drawn from for about ten years. At the same time as the nurse attempting to insert a cannula Sharon arrived, which eased the tension well mine at least. The medical staff were a little surprised that I had a friend join hubby and I but it doesn’t say anywhere that I can’t have more than one person with me. Despite the cramped bay of six large reclining chairs that look a lot like the ones you have at the dentist.


The health care assistant decided she would go next on my arm and she is the one that blew my vein. She was the one who got my vein the month previously after another nurse failed four times to hit the jackpot. Again before she started I told her she would be unlikely to get anything from that location and that the back of my hands were better. As my words of wisdom were being ignored I started to chat to Sharon.


When the second attempt of inserting a cannula was aborted my arm immediately began to bruise a nice bright blue. At the same time my Registrar came in and we managed to have a catch up, he admitted that currently he didn’t know the status of me getting an epidural blood patch as his boss was away. However the caffeine infusions could be used as a stop-gap as long as they helped. The occipital nerve block injections couldn’t be done for a while yet which was a shame as they had started to wear off and the pain was starting to come back.


After hearing of the two unsuccessful attempts to get a cannula in the registrar decided to have a go. I know that my veins are terrible and I don’t mind how many attempts they have my golden rule is don’t dig around if it’s not working. One phlebotomist told me my veins were like trying to stick a needle into an elastic band, they just move out-of-the-way. The registrar was happy to have a go at the back of my hand. Whilst he was looking at it he said “I wonder where that vein goes?” I replied as quick as a flash “To the heart” which had the bay in stitches. I knew the doctor meant he needed to work out where and in which direction it went so he knew which way to get the cannula in. A little light-hearted humour is needed sometimes.


I was surprised how smoothly that this was all going I had anticipated that I would be left hanging around for ages and had even told Jay that should the infusion not had been started by 2pm I was leaving. I can get a bit stroppy where hospitals are involved. This time during the infusion I was wired up to a heart monitor, which apparently should have also happened on the ward when I had my first infusion. There was though very little point in having it on as due to the amount of tachycardia I was having the healthcare assistant simply switched it off within 15 minutes of the infusion being started. A little concerning when caffeine can play around with the rhythms of the heart.


My friend Sharon spent the entire time watching the monitor as she couldn’t believe what my heart was doing. I have no idea why the tachycardia was so bad jumping from 70bpm to over 160bpm with me just sitting forward. I am guessing that my heart does this all the time and that I am just unaware of it doing this as I am not hooked up to a monitor 24/7. Sharon told me that although I had said about my heart being crazy she really needed to see it to truly believe it. My heart never sits in a rhythm and jumps all over the place but no one that has seen this happen in the medical profession has been concerned. However if it weren’t for Sharon’s eagle-eyed viewing of the monitor I wouldn’t have discovered that my heart was also having significant episodes of bradycardia (going to slow). I have caught my heart on the odd occasion going about 50bpm but it’s happened twice in 9 years. I just thought it was a one-off and that it was just part of my crazy heart rate. Sharon asked me if I was feeling alright and I wasn’t I had a strong urge to yawn and had chest pain. She pointed to the monitor and it was reading 41bpm. I am 5ft 8inches tall and heavy (I have put on weight since the CSF leak was diagnosed purely through boredom of not being able to do anything much) I am not an athlete so I shouldn’t be experiencing a heart rate that low. Then within seconds it bounced back up to 140bpm.


I brushed it off at the time as I didn’t want to cause a fuss but the longer I thought about it the more concerned I got. I emailed my PoTs consultant and told him my concerns, that I am not just experiencing Tachycardia but Bradycardia also and that doesn’t fit with a diagnosis that is purely PoTs.


I soon forgot all about my heart rate when my husband managed to fall off one of the reclining chairs. I can’t write it well enough to explain how funny it was. One minute he was standing playing a game on his phone the next minute he appeared to be doing a gymnastic routine, having misjudged where the seat was and having sat down on the bit you put your legs on. He slid down to the foot rest and somehow managed to jump to his feet. This was witnessed by everyone in the bay, for the first few seconds there was stunned silence and then Sharon and I fell about laughing. Thankfully he hadn’t hurt himself only his pride. The staff were quick to ask him if he was ok, which he was and the whole bay was roaring with laughter. It was the fact that when he jumped to his feet he looked like a gymnast finishing a floor routine. It did make for a lasting impression for Sharon as this was the first time she had properly met him.


Initially after this infusion I wasn’t headache free, all the way home every 10-15 mins I was getting sharp stabbing pains in the top of my head. The next day I woke up with head pain and it made me feel so down hearted. I felt like it hadn’t worked and that there was now nothing that could help me. It wasn’t until the last 7 days that I have appreciated how much the infusion had taken the edge off as the head pain has come back. It has been so bad at times it has completely floored me and I have been left unable to do anything much but lie down and feel sorry for myself. I wish I could cry about it and let some of this pent-up emotion out but all I feel is numb. I just currently feel like there is no end in sight.
This week I shall be ringing my consultant’s secretary and attempting to book myself in for another infusion as it will have been a month a week Friday since the last one. I am hoping that they may also do the occipital nerve block at the same time although the registrar did say that this would be unlikely to happen. I can live in hope.