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

Carers and phone calls

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!!!

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!!!