Phew, that wasn’t as bad as expected!! But has anyone seen my knuckle??

Today was D-Day, my first appointment with my new doctor.  I can’t say that I was looking forward to it.  My brain was in total overdrive and the two nightmares I had last night definitely didn’t help.  I had written my list, an essential piece of my doctors appointment equipment for without it I am a blithering idiot, a list that unfortunately had become rather long in the time since I last saw anyone because half of what needed doing hadn’t been.  I had my other piece of essential equipment my fidget toy, today’s preferred one was my fidget cube.  So with that in hand I went, I was shaking I have to admit and although my mum was with me (she calms me down) I really was dreading it.  I think part of it was just my usual doctor nerves, my sensory overload was in overdrive, but there I was in the waiting room.  I have to admit seeing the new doctor (a female when I’ve had a male for ever!!) in my previous GP’s room was rather surreal but it did make it slightly easier, and joy of joys she was nice.  I wasn’t expecting her to be horrible, I just didn’t know what to expect and for me that is always a no-no.  The unexpected and change for me are two of the things I find hardest and along with my sensory processing problems are why I suspect that I may have an un-diagnosed autistic spectrum disorder, but at 38 and with all my other problems I have to admit that it isn’t something that I’m particularly in need of exploring.  So anyway I shan’t bore you with the details of the appointment, but I shall simply say that 30 minutes later (as I had a triple appointment) 3 referrals to new specialists, 4 prescriptions, multiple blood tests requested and half a dozen problems we are putting a proverbial pin in I’d say it was a success.  I even have an appointment for next month.  I have slightly settled since, my heart rate has gone from a resting 135 to a more normal rate (my POTS always goes mad at the doctors as it’s too hot, I’m uncomfortably sat in my wheelchair and there’s too many people the list goes on) and I’ve had two much needed a drinks!! After that a rather nice curry, and an evening of dropping off while trying to catch up on emails I have now, I think, just about recovered!!!

I said that I wouldn’t bore you with all my symptoms but a new and rather strange one is that one of my knuckles has gone A.W.O.L.  My fingers have been bad for ages, I wear both wrist splints and finger splints on both hands (see pictures) but my knuckles are both dislocating and the disappearing one is a strange one.  It’s making everything, from operating my mobility scooter to writing and typing, really really difficult. Not really sure what’s going on apart from dislocating and swelling, but as the hand therapist I’ve been seeing has now finished we’ve got to find a new one!! That is one of my appointments, when and if we can find a new specialist!! 

So all in all it wasn’t as bad as expected. Even my visit to Currys PC World wasn’t too bad, quick and all sorted out for me. Thank you #curryspcworld. So until next time, thank you for reading!!!

My A.W.O.L. knuckle (you can just about see the bump of my ring splint where my knuckle should be!!)

My ring splints. I may post a review of these soon, please let me know what you think in the comments

Why making fun of me, for falling asleep, hurts so much….

You might think it’s funny when I fall asleep at 5pm or throughout the day, you think it’s hilarious that I can’t stay awake through a t.v. programme or a film but let me explain why that happens. Let me explain why it hurts when you think it’s so funny that I am always tired.

No1. It’s not just being a little tired, my whole body aches with the effort of trying to stay awake. I’ve had days where exhaustion just overwhelms. It is fatigue and fatigue is very different to tiredness. It’s very hard to explain but tiredness can be rectified by a nap or a couple of good night’s sleep. Fatigue is relentless, your mind and body are tired; lifting your arm hurts with effort. You can barely string a coherent sentence together and thoughts stay fleetingly in your head before flying away never to be seen again. You cannot stay awake however hard you try because the effort of staying awake is in itself a huge effort, think about trying to swim in a pool of treacle with a full near costume on, could you do that?? Not easily!!!

No2. I have insomnia and painsomnia and that’s not fun. Insomnia speaks for itself, I tend to go to sleep ok but cannot stay asleep. 2am is my normal wake up time where, if I don’t get up I end up feeling worse. I therefore have made binge watching box sets of dvds in the early hours a new art.  Painsomnia is something that people without a long term condition often haven’t heard of. Instead of just being unable to sleep painsomnia instead is where you cannot sleep because of pain. Usually I wake up because I’ve dislocated or sublaxed a joint. Waking up with a hip or knee on a glorious midnight walkabout is not really my idea of fun, if it’s not those it’s my shoulder making my arm do a great impression of no longer belonging to me!! It’s not exactly conducive to a good night’s sleep. The midnight dislocations are inevitably followed by the lenghthly relocation process, wriggling about until the glorious pop moment when you know it’s back where it should be.  I know then that I need some painkillers and a recovery period so again am to be found on the couch binge watching box sets. Now much as getting to watch my great dvds is good, the timing could definitely be better. I’d much rather be watching tv at a normal time and sleeping 7 or more hours a night, but my body has other ideas and so at an average if a 2am wake up time is it really any wonder I drop off at 5pm?? To me I’ve often been awake 15 hours!!!

No3. What takes you 10 minutes has taken me 40 and used every last bit of strength that I had left. Now a lot of people use the spoon theory to describe our energy stores. The theory goes that you start the day with x amount of spoons, during the day everything takes some of those spoons until you have no more left. Most people have the chance to replenish their stores during the day with either food or less taxing tasks. To me however there are no less taxing tasks, each one is hard. Some, yes, do take different amounts of my energy but they all take energy and so before the 3nd of the day I’ve already run out of “spoons”.

No4. You think I’ve been sat doing nothing all day, when in fact that “nothing” has taken so much effort I’m exhausted. Just sitting takes a lot of energy especially on a bad day. EDS makes any movement difficult, the threat of dislocation looms at all times. It is an effort even using brain power especially with brain fog when you cannot really even think what your own name is. You have to think about how to get up off the sofa, you have to think how to do everything to minimise either having symptoms or to make sure you don’t have an accident e.g. a fall or trip over etc. Having POTS and my other conditions means that maintaining an upright position even seated takes effort. My pulse races and so I constantly feel ill from that, it’s exhausting. Added to that you have a mountain of appointments, every few weeks you have to military plan how to get to said appointments, who can take and assist you and then you have to plan what you are going to say. We find that so many people in the medical profession haven’t heard of EDS or if they have a many more have lots of wrong ideas about how it can affect you, this means that you have to go prepared and read up on things too!! It can be a full time job. I also complete surveys, it keeps me busy and gets me vouchers to spend on things I couldn’t necessarily afford. These take a lot of brain power and again effort just to sit up doing them.

No5. It means that you don’t understand what I go through and why I’m so tired. Your teasing, whilst not meant to be mean, shows me that you don’t understand all these problems. You don’t understand how much just living day to day is. How hard I find it to do anything, how even sitting takes a lot of effort for me. You don’t see that I don’t like that I can’t stay awake, that I’d much rather be watching programmes I like and doing crafts. You don’t understand that however much or little sleep I get I’m still fatigued all the time and that you just don’t see that I don’t choose to fall asleep. It is simply that my body has given up, has no more energy left and has no choice but to shut itself down. 

So yes I do fall asleep a lot in the evenings, yes I can’t stay awake and am constantly tied. But I believe I actually have good reason why that is. I’m not after pity from anyone, but some more understanding would be appreciated.

Let’s guess who my GP is!?!

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. 

Not your average mother daughter outing!!

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!!!