I’ve been having a bad few days so haven’t been up to posting. Today’s post I decided to write about my carers.
I’m lucky in a number of ways but one of those is my wonderful carers. I’ve deteriorated so much I have 2 different ones. I have my wonderful mum, who I love spending time with and who is my full time main carer, and then I have a regular carer from a care agency. I’m lucky on the whole the carers I’ve had from the agency have been really great and have become good friends. My current one takes me to appointments and helps me shower, do my hair and get dressed. I’ve had to make my peace with the fact that I need help with showering. I’ve always hated my body, I’ve got a patchwork of scars on my stomach from 3 keyhole surgeries (why they couldn’t go in through the same holes I will never know but presume there is some medical reason why not). 15 different sized keloid scars make me look like I’ve either had my body rebel against me and split apart or that I’ve been the victim of a very vicious pixie attack where their little sword has pierced my stomach in short little bursts!! It’s not pretty. Even when I had lost all my weight, (I had a gastric band and lost 6 stone) or before I’d even put my weight on, I had a sea of bright stretch marks shining on my thighs and stomach like waves rippling on an ocean, due to my EDS and my stretchy skin. I won’t go into any more detail as I have gone far into the realms of too much information already but needless to say I hate my body. Getting used to having another person helping me shower has been extremely difficult, my carers have been such that they have taken some of the embarrassment away, but I still do feel a little uneasy. However I do need them as I cannot manage on my own now. They also take a little of the work off mum who, apart from this hour in the morning and for certain hospital appointments, looks after me for the rest of the day. I have so much appreciation for what my carers (especially my mum) do.
However some people I rely on like my mum are tired themselves, it’s not that she doesn’t help me as she is always there for me but I wish I didn’t have to rely on her so much. She has a heart condition herself and also seriously arthritic hands. I have been trying to get mum some help from carers support (in the UK as am I) but they require a phone call, phone calls for me (and my mum) take all my energy, the sheer terror that a ringing phone sets off can trigger a total panic attack before I even answer it. Making a call takes every ounce of strength to remember to breathe, follow the conversation and formulate my answer that often I can’t physically listen to the other end, I have to forget that long pauses on the phone don’t work and people often get frustrated with me. Either that or I can’t stop myself from interrupting their comments because if I don’t say my thought then and there I will forget it, again making the person on the other end of the “conversation” impatient with me. I used to write a short comment to read out before I started a phone call saying that they had to give me time to think and they had to be patient because sometimes I would have to ask them to repeat things, but even that didn’t work and I used to get them being even more impatient so I have stopped. I even have a message on my phone asking people to leave me a message so that I can expect their call and hopefully answer it and that I will block those who don’t leave a message as I will assume that they aren’t genuine (because I’ve had countless PPI, injury lawyers and other scam/nuisance callers), but again that seems to annoy some who leave stroppy messages!! It’s lose lose for me because it all adds up to my total avoidance, wherever possible, of using the phone. But when, like now, either I or someone I know needs something I spiral out of control again just wrestling with whether I am able to build myself up enough to make one simple call or not. I just wish that getting help wasn’t so hard!!!
So what I will do about getting help I don’t know. But we’ll muddle through I’m sure, we’ve had to up to now!!!
I have thought long and hard about today’s post, writing and rewriting things that made no sense. The problem that I had was that yesterday I had another bad day, my anxiety at full after another problem with trying to sort out a doctors appointment. I would have in the past turned to my GP with my issues with my anxiety at the moment but they are one of the things that is making the situation worse. I know some people won’t understand my problems, so my doctor has changed suck it up and go to see a new one. But the two things that make this harder are living with a long term condition and my severe anxieties brought on by years of being told I was making things up as a play for attention (when ironically this was the last thing I wanted as I hated attention). Going to a new doctor when you have a long term condition means going through all the things again that you have currently and explaining how all those things you have are affecting your long term conditions. When you have conditions like EDS and POTS this makes it even harder because most of the time your doctor has never heard of the condition or if they have they don’t always understand it. Even looking back at previous notes becomes a mammoth undertaking, scrolling through pages and pages of notes because you are at the doctors so much most of the receptionists know you by name before you have to give it, and you know about them and have had long chats with them!!! These regular trips often include a page worth of new symptoms and deteriorating problems so you have mammoth sets of notes, and that doesn’t include the hundreds of tests results and specialist reports (most of which have been a waste of time as again they’ve not heard of the conditions). I have developed a rather large phobia of the doctors, waiting rooms full of sensory overloads, doctors who think you’re lying or drug hunting (because of course everyone wants to be on a large cocktail of drugs that treat each separate condition and make it look like you have a chemist shop on your shelf don’t they???) and you have to go to the doctors and hospitals more than the average person. I’m now trying to see the locum one more time before I start a new relationship with a new doctor and hope that they will at least listen. Change for me anyway is nearly impossible. Last minute changes put me into that spiral of anxiety where I cannot think straight. I have to plan my days and friends all know that I have to have notice for anything they want to do with me. When unexpected change does happen I then start with all my OCD rituals which make me more anxious. Of course with all this change anyway I am struggling to cope.
That has only been one of my problems the last few days, another has been that my Brain Fog has been so bad too that it has been taking over 4 times as long to do anything. I have been unable to think straight and coherent thoughts have been impossible again. My brain fog is made worse by stress and anxiety and depression all of which I have been suffering from these past few days. I’ve had lucid moments and it’s during these lucid moments that I’ve been able to get onto here to write a post. Yesterday wasn’t one of those times and so my blog post when I read it back looked like it had been written by someone with no knowledge of the English language, it was littered with grammatical and spelling mistakes and seemed as though my fingers had written thoughts as they came tumbling out of my head at 100 miles an hour (hence why it was deleted!!). Brain fog is like slowing your thoughts down and anxiety is like they are being sped up and it seems as though the two had clashed and my thoughts came out at 100 miles an hour but my fingers could only write them at a very slow speed. I’m still struggling to get my thoughts out but at least I have again have had those occasional lucid moments.
Today’s post has been, I’m afraid, another reality one.
So when I was diagnosed with EDS it was a huge learning curve for me. Learning that things that I’d lived with for years were not normal and that it was ok to say that these things lead to pain or stress or both. I knew that I had something and was diagnosed as hypermobile early on but it was everything else that goes along with EDS that was the learning curve for me. The clumsiness that had always been laughed at was actually caused by my wonky body and some of my phobias like being scared of heights were actually caused by my proprioception (fancy word basically meaning where your body is in the space) problems. Even my dizzy spells, that I have I’d been having for as long as I can remember, are actually down to my POTS and not the “hyperventilating” or even the “attention seeking” that my old GP had been for years saying they were. However for me one of the biggest things I’ve learnt is about my sensory processing disorder.
Sensory processing disorder, for those of you who don’t know, is (in layman’s terms which is all I can use properly) where your body misreads the sensory signals you get and so things feel different to the norm. This was a huge curveball for me. Allowing me to realise that feelings I’d just thought everyone had weren’t actually normal. The fact that certain smells made me really sick wasn’t what everyone felt when they smelt unpleasant things (this is the case for lots of others but I also got almost panicked by this feeling too). The reason that some foods I didn’t like because of the textures and especially that the texture that I felt was bizarre to me, like beans have too many textures, was normal for someone with sensory processing disorder (along with the other things not in isolation). The feeling of burning that rubbing buttons left and itchy on seams that most wouldn’t feel wasn’t right. They might be uncomfortable for some others but they weren’t like they were literally burning into my skin or the severe itching I felt, almost like I had hives. This and various other things was a turning point for me. I understood that it was ok to feel these things, that they weren’t what everyone else felt. It was freeing, allowing me to acknowledge that it was real and was happening and that I was allowed to say that I couldn’t put up with it any more.
Now this meant that to some outsiders that I was making my symptoms match the illness as opposed to the other way round. There still are a number of people I know don’t believe me and think that I’m trying to make myself sound worse than I am. But it wasn’t that, I just now understood that these were symptoms not normal or in my head (e.g. not made up as they are a misfiring of nerves and misreading of signals from my brain). I could now say I didn’t want to wear certain things that were uncomfortable to me. I could tell people that the texture of something was weird without thinking that I was just strange. I could acknowledge that places like doctors surgeries and hospitals did put me in a panic, that I was in sensory overload. There were too many senses that I couldn’t process going on at once, I simply couldn’t process a person talking to me unless they were speaking directly to me because of that overload.
I also, as well as knowing why I’m feeling these things, can also acknowledge the things I know can relax or soothe me. Where I used to doodle or fiddle or tickle my skin because I liked the feeling, I now know to be a sensory seeking behaviour and one I know is relaxing. I have purchased fiddle toys to take with me and these greatly help to stop the panic.
In allowing myself to feel these things I have opened myself up to those who don’t believe me, who think that I’m making these things up and who think I’m attention seeking. But I know, and my family and real friends, that actually I just have learned that my eccentricities are part of a condition and that condition has a name. I’m just allowing myself to have the tools to calm myself down and learning how to deal with a body that processes it’s sensory signals wrongly and that is ok. There will always be doubters but I know that I have sensory processing disorder.
So I wasn’t going to post today thinking that my day of sitting on the sofa, doing nothing apart from watching one of my motorsport loves of Formula 1 was rather uninteresting. I can’t really say much more than that, I have indeed just been sat today but I thought that I’d still share something with you.
That is that as my title (quite poorly ripped off from Winnie the Pooh) infers, technology scares me. I used to be able to do a lot, well I used to be able to blag a lot. I used to fix problems in the department I worked in when I was still able to work, and I have helped my dad out when he used to work within an IT section. Never though did the phrase “use it or lose it” apply more. I simply didn’t have the need or desire to keep going with this computer lark. When I was still working I helped to design an intranet site for the company but this was more about my creativity and less about my skills, letting other more technical people help me whenever I needed it. So when I wanted to start a blog my brain went to overdrive, how on earth was I supposed to do this when I still have to ask my dad what error messages mean on my computer and I am still getting to grips with Facebook and what it does!!! I can’t say that it’s been easy. I still have very few followers, and am struggling to gain more as a lot of the groups that I’m members of have a no blog sharing policy on them (which I only found out after being told that I shouldn’t be posting, even though I read rules I often don’t understand the nuances of what “external sites” means and other little loopholes). I had been sharing away hoping that people were reading my musings and hoped that people would follow me and I’d be able to hopefully start sharing reviews of places and equipment to help others. The group bans on sharing has meant that my visibility has dropped and to be honest I’ve become very disheartened again thinking that no one is reading. I have however decided to keep going, I want to try as at the moment having very little going in my life I want to at least say that I gave it a really good go. So I have done a little bit of research, not as much as I’d like yet, but my brain can only take small chunks at a time so without going into full melt down mode so I will be drip feeding my learned skills (which knowing me will be unlearned as quickly as water running through a colander) into my blog as and when I find useful things. The first things I have done are:
1) Added sharing buttons to my page so hopefully, if you so wish, you can share any of my posts straight to your own Facebook or Twitter or various other social media pages. Ooo get me hey!!!!
2) I have added a link so my posts will be shared directly to my own Facebook and Twitter accounts so that I don’t have to remember each time to manually go in and share each one.
3) I have set up a new Facebook group where I want to share my posts, however this is where my technology problems have again meant that it’s not quite worked out right. I’ve not worked out how (or if it’s even possible) to share directly to this page. The idea is that, more so than my own Facebook account, a group will be viewable to everyone and so hopefully I can attract followers that way. If anyone knows if this is possible to do I would very much appreciate them commenting below and helping me as I cannot find out what to do. It may be that I am overestimating what Facebook allows or that I’m just being blind but I cannot find this. Also if anyone knows how to share to Instagram I’d be grateful for the help because I’ve had an Instagram blog for a while and I would like to also be able to share these posts with my followers on there. At the moment I’ve been going in and manually sharing with Instagram, if there is a way to share automatically any help would be gratefully received. I am going to continue with my Instagram blog too because I find that good for the very short posts that I sometimes want to share!!
So my post again has become a mini essay when I started out to write a short post. My technology problems struck again half way through writing and I lost a load so I think perhaps I’ve been going too long!! I shall sign off now as I want to have another go at the box I started a long time ago and only got the top done (with the hot weather and high pressure affecting me I’ve not been able to do any this week).
So yesterday was a bad day. Seems the pressure and thunder affects me more than I thought and whilst in Waitrose I almost blacked out and also was feeling terribly seasick with my POTS. However it’s the funny ish moment that happened after that I’d like to share with you today!!!
Mum and I were walking down the high street when thunder was heard and was so loud it was also felt. My mum jumped out of her skin. I HATE thunder. I’m petrified of it. If I could I would still go into my parents bed and shake as I used to do but at 38 and disabled this isn’t really feasible anymore. However we were outside so I wasn’t particularly happy. However as it wasn’t raining we carried on planning to continue shopping. Lulled into this false sense of security we didn’t go into the shopping centre at the nearest entrance. Big mistake!! BIG spots of rain started falling so we started to speed up, but within seconds the heavens had opened and saw shoppers diving for cover in the nearest shop doorways. Being on my scooter I can’t really do this without making shopkeepers angry for blocking their door and knocking others out of the way!!! Split second decision we decided that the shopping centre was out best bet. Mum started running and I floored (or whatever you do to a mobility scooter) my scooter, mmm I thought this really isn’t going too fast. Mum told me not to wait for her, but unfortunately my scooter didn’t go any faster!!! I was desperately willing it to go faster while OAP’s children and other shoppers are fleeing past giving me very strange looks trying to work out if I actually liked getting wet or I was just stupid getting wet while driving a scooter!!! Nope I was neither 4mph is simply not as fast as fleeing shoppers!!!
Now I’m not saying that I want to be going fast enough to be a speed demon leaving a trail of destruction begin me while speeding down the high street, but I did expect that I should be at least as fast as my mum jogging. What I didn’t expect was that whilst driving full pelt I’d be overtaken by OAP’s, children and anyone and everyone else!!! I have to have a collapsible scooter because it has to go in my dad’s car and I can’t afford to get my own car even on motability because I can’t afford my rent or anything then. I do really need an electric wheelchair because my hands struggle to use the controls on my scooter, I need more back support and I cannot self propel now. But even electric wheelchairs don’t have a particularly fast top speed either. But I think that most mobility vehicles are designed with older people in mind, and because you cannot go too fast on pavements. However I think they forgot that when it’s raining you want to be able to dash for cover, not pootle along getting soaked, lol!!! I also think the part of me that likes f1 and motorsport etc is very disappointed that I can’t eek that little extra speed out of it by coaxing the controls, nope 4mph is the top top speed and that’s it!!! Jenson Button and Lewis Hamilton have nothing to worry about, even the faulty McLaren engine could lap me many many times over probably I could do one lap in the time they’d have finished!!! Ok maybe not quite, but they could even beat me walking round a track!!!
Typically after getting soaked I decided a pac-a-mac would be a good idea, bought one and emerged from the shopping centre to the sun trying to break through the clouds and no rain in sight!!! Oh well next time it might come in handy!!!
Let’s talk doctors. When you are a “normal” person it is nice to have a good relationship with your GP, however when you have a long term condition it is essential. Your GP is often the only one willing to send you to see specialists and to understand your everyday struggles. I have been very lucky, my GP for the past few years pretty much since I became disabled has been the only one who has constantly believed and fought for me (apart from family and friends). Through specialist after specialist he was there trying to get me the help I so desperately needed. I had to have monthly appointments which were extremely difficult (sitting in a wheelchair in a waiting room that set off every one of my sensory issues and anxiety of lots of people and just the general discomfort of sitting for that long) but he was very sensitive to my needs and even came out and pushed me in my wheelchair to his room “to save my mum” having to strain her already sore hands. So imagine my anxiety levels when in November last year my “rock” of a GP announced that he needed a break from the NHS constraints and stresses and was taking a sabbatical. The only person who knew how difficult I found sitting in the waiting room, all my conditions (that most doctors have never heard of), and who had believed and fought for me when others had written me off as neurotic. I was in a huge panic, my anxiety levels were at critical and I just had no idea what to do. I asked him if he was coming back, if this sabbatical was just that or if he wasn’t coming back. He assured me that he was coming back, he just needed a complete break. He agreed that I would only see his locum if I needed to, filled him in on my conditions and I was somewhat pacified that he was going to come back in June/July this year. I had a couple of issues while he was gone and his locum was nice, reassured me that as I’d now seen him and spoken to him that he would look after me.
However about a month ago the bomb dropped, my GP’s sabbatical was now permanent he wasn’t coming back. Cue my anxiety levels returning to critical and my panic setting in. What the “enter own expletive here” was I going to do?? I currently have investigations going on because my liver function hasn’t returned to normal after gallbladder surgery earlier this year (if anything it’s got worse) and I’ve been found to have cysts on my kidneys, I’ve also got an on going issue with my chest. Plus,as if that wasn’t enough, my EDS; POTS, fatigue and pain levels are also not returning to normal after the surgery. So I’ve had the countless blood tests and samples done, been scanned and x-rayed and it has now become necessary to return to the GP to see if anything has shown up or if I’m just to be labled a medical enigma again. I went in as I had to chase a prescription that had gone missing (my chemist is within the surgery) and was told that the replacement doctor was now in our acute unit and so appointments cannot be made with him (acute unit appointments are for on the day only and not for ongoing problems). Now I was on the verge of a panic attack in the middle of the doctors surgery begging that he could at least see me once more to sort this problem out. Baring in mind though that all over the website and surgery are signs saying that the locum is seeing all my old Drs patients until a permanent replacement is found. Now if I didn’t have the on going conditions I might be able to see whichever doctor is available. However you only get 10 minutes for an appointment how can you, within that time, try and teach the doctor about conditions they have never heard of while trying to say how these conditions are being flared up by something. You also have to justify the need to be on the concoction of medication you are on simply to manage these conditions and this simply cannot happen within the time given. I have now been waiting 2 days for a phone call to see if the locum will see me and nothing. My panic is so bad, do I phone the doctors surgery inducing another panic attack as phone calls are impossible for me? Who will I see if they won’t let me see the locum? If I see the locum who will I see next time? The list of silly questions keep going on and on, it’s like a train that doesn’t stop. You know, if you can think logically for a few minutes, that these thoughts are silly. But try as you might the thoughts won’t stop they keep coming more and more faster and faster. I don’t know what I’m going to do, but until it’s sorted I’m going to have to live on the edge of panic staring over the edge. This is what it’s like having an anxiety condition and other long term conditions together. This is my life.
A post about my blood test traumas so please don’t read if you don’t like reading about that!!!
So a few weeks ago I had a batch of blood tests. Not too bad for most people, but our local surgery has recently stopped taking blood and the phlebotomists there have been the only ones, for years, that have been able to get blood out of my completely useless veins. I had to go to the hospital where thankfully the phlebotomist that used to be at the surgery was, and thanks to my extremely high pulse rate thanks to my stress and POTS I did (for the first time ever) manage 7 phials in one go. So you can imagine my thoughts when I got a phone call last week asking me to go again for, thankfully, one more test!!! Mum (who is my carer) and I decided to go on Monday again, as we had last time, because it had been quite quiet then. Imagine our surprise though when on Saturday mum got a letter from her GP asking her to have a blood test too, oooo mother and daughter outing for blood tests, boy do we know how to live!!!
We got to the hospital AND to our surprise no-one was there at all waiting do we went straight in!!! Again my relief when it turned out to be the phlebotomist from my GP’s surgery was emense. Mum went first as they don’t have a problem getting blood out of her. She finished and held the cotton wool on for a few moments then thought it’d stopped so she said she wouldn’t bother with tape!! BIG mistake, few seconds later she had blood dripping down her arm!! Lol we have me that is near impossible to get blood out of (my veins at least) and mum who you can’t get to stop bleeding!!! Mum was cleaned up and it was my turn, took a few mins but she found a vein, however as usual and despite only needing one phial my vein started collapsing as soon as she struck it. Thankfully a lot of massage on it and the one tube dripped to full enough!! Ouch, got a nice dark bruise (but nowhere near the worst I’ve had) to show for my troubles!!!
So my mum and I really know how to live right!!?? The effort of going there in the heat and back and my body was protesting BIG time so as soon as I was back home I was lead out on the couch trying my hardest to keep cool again with an icepack on my back and copious amounts of water being supplied by my ever wonderful mum!!! I struggled to even move without my pulse rate soaring and sweat dripping off me. But let’s hope that the blood test was the last for at least a few weeks!!!