The unspeakable problem!!

I know it’s not something that most people talk about and there is a reason for that but today I want to talk incontinence. It’s not talked about because it is embarrassing, it’s not interesting and it’s not something that you want most people to know about.  It’s not something that you can just chat about with friends but when, like me, you have it you can’t just forget about it. So I’ve decided to be open with some of my struggles with it in the hope that at least one other person reads it and realises that they aren’t alone. I’ve got separate diagnoses for this, I’ve got mixed urinary incontinence functional incontinence and nocturia. What does that mean?? To be honest not 100% sure and to me it doesn’t matter. What does matter is that I don’t get the normal urge to go to the toilet, my body doesn’t tell me that I just need to go to the loo instead it waits and only tells me when I’m absolutely bursting to go and this means that by the time I get to the toilet I’ve already started to go. As discussed before I have a big problem with staying asleep, but if I did stay asleep I’d be waking up needing to go and the same problem then happens in that I can’t get there in time. I have seen urologists, specialist physiotherapists and had tablets, exercises and even stimulation none of which has worked. I now have an incontinence nurse who prescribes pads. 

The biggest problem with pads is none are fit for my needs, well none that we’ve found. I either leak meaning I’m having to change clothes 3 or 4 times a day, or they’re uncomfortable or both. The new ones I’ve had from the nurse didn’t stick, and my niece wondered what was in my trousers. I think that the bigger pads are designed for older bed bound people not people like me. Sensory wise I hate having to wear pads and with having to change all the time so my GP and I agreed that something more long term is needed and so we’re looking into the possibility of full time catheters. It’s testament to the fact that I am at the end of my tether with this because I hate hospitals and the thought of another op fills me with dread, but I can simply not go on like I am. So it’s another waiting game, seeing if and who will consider me and then which sort of catheter I might be able to have. Who knows. But for this and future posts about this the unspeakable problem is becoming speakable, I’m not saying it’s not embarrassing but it shouldn’t be hidden away. We can’t help it, it’s our bodies having some sort of problem. Mine is my wonky body not working correctly again. 

So it’s onto the next stage for me, urology for possible catheters. More questions for now to then hopefully sort out my unspeakable problem!!! 

Eurgh look at the range, not the height of comfort or fashion in any way shape or form!!! (And these aren’t the worst!!) Pads are for illustration only and aren’t nearly as bad as my actual pads!!!

Blood test deja vous!!

Yet again two days ago saw me off to the hospital with mum for yet more blood tests!! We have researched and found out the quieter times because of my sensory problems and problems with crowds so late morning saw mum and me at the local hospital for my blood tests. Seems however that most of Horsham had had the same idea and we arrived and took our number  (Yes like a meat counter or other place you take a number and sit and wait to be called) I took number 76, but when we arrived they had just called 39. No seats in the waiting room or entrance to the room and my fear of crowds saw us waiting down the corridor on my scooter so mum was left standing. As discussed before our local surgery has stopped doing blood tests so this is our only option so we had to wait, because you cannot guarantee that if you come back at another time you’ll have any more luck. I’d forgotten my fiddle toy, as I’m preparing a going out kit bag and I’d been thinking of putting it in that. Because of that I’d forgotten to put one in my main bag. That was unfortunate because the sea of people and the lights and wait, plus the fact that the corridor has the toilets in it meant that I desperately needed something to calm me down!! Our wait of over an hour was rather difficult for me, this was our view……

Now I was glad that I was in the corridor but not sure how I would have got past the lady in the wheelchair even if I had wanted to be in there!!! So after over an hour we were finally called, by this time there was only 2 phlebotomists on duty and my stretchy crappy veins decided not to play ball!! Thankfully not as bad as my worst attempts, but I needed both phlebotomists, 20 minutes, 2 rooms, 3 changes of needles and thank goodness only 2 sticks and a vein massage to get 3 phials of blood!!! They better not need any more soon because I don’t think either mum or I could cope, and I can imagine the phlebotomists drawing straws to see who was unlucky enough to get me!!!

Arm 1

Arm 2…

But let’s see what these ones show shall we!! At the moment it really could be anything!!

It took a while to get over these my POTS and fatigue have been high since. I also have a nice bruise to remember the day!!  

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

Appointments, pacing and “The Unmentionable problem!!!”

This week I have had two hospital appointments, both at our local hospital which has meant that I have been able to get to them in my mobility scooter.  It’s meant though that for the rest of the week I’ve not really done anything, I’ve not been able to go out in between because for me that is the extent of my energy supplies.  The rest of the week has seen me on the sofa hoping to conserve enough energy to make it through the appointments.  Pacing for me doesn’t always work, I am not very good at working out what I can and can’t do and I get frustrated at my lack of energy after doing something which just shouldn’t take as much energy as it does.  Now I will admit that appointments though do take an awful lot of my energy, I have learned through trial and error that 2 is my absolute limit unless in exceptional circumstances.  It’s partly because just getting anywhere, even on my mobility scooter, uses energy but it’s also partly because appointments especially hospital appointments set off almost every one of my sensory issues. They are noisy, they smell horrible, the lights flicker and are bright, there are too many people, there are just too many things to cope with all at once.  My sensory side just wants to go and rock in a quiet corner outside and leave my rational side to go in and deal with the appointment anxiety.  You see for me hospitals and doctors have also become a place for me to fear, a place where I have heard “it’s all in your head” more times than I care to remember and so an appointment especially with a new person or department are panic inducing, will the person listen, will they have heard of EDS, will they know what POTS is, will they know enough about these things to not call me a liar?  It’s also often a place where instead of the answers I seek, I get more questions.  So two appointments this week has been my limit, and despite not doing much else to cope with these this afternoon has still seen me yawning so much that I think my mum has thought that I’ve been trying to swallow her!!! As I have been worried about my appointments I haven’t been thinking of my blog so much.  I will also be having a rest day tomorrow as my POTS during my appointments was going mental, I had a pulse rate of over 140 at one point, some of it was with the panic that the appointments set off but a lot of it was definitely my POTS.

My appointments were fairly well spread out, I had the podiatrist on Monday and then today was the unmentionable appointment!!  It’s not an easy topic to cover, for me it’s mightily embarrassing but for the first time I will bring it up, today’s appointment was at the incontinence nurse.  I have had numerous interventions to try and help with this, but nothing has worked (I might come back to those at another time if you will indulge me here) so today was solely about sorting me out with pads.  The array of the most embarrassing, sole destroying pads was brought out to show me after I was given another label to add to my ever expanding list I am now considered to be “functionally incontinent”.  To be honest at this point I was taking very little in so apart from the fact that there is now nothing that can really be done to improve this situation, it is down to my disability, I didn’t really understand that term.  I was more concerned that having to currently change my pads up to 11 times a day, the 4 pads that can be provided by the service isn’t going to be enough and the fact that at 38 I don’t want this to be my life from now on.  I also was not very happy with the pads and the fact that they were huge.  But there we are, for now at least I will have 4 pads a day provided for me on a 3 monthly basis.  The rest I will have to pay for.  We shall see what the future will bring but for me the unmentionable problem is, if you will allow an extremely cringe worthy pun, a complete pain in the backside!!

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!!!

Why my embracing my sensory and sensitivities is not making them up.

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. 

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.