Summer days out!!

Firstly I wanted to say that I was totally blown away by your response to my post on “the unspeakable problem”. Far from being unspeakable there was such an outpouring that I was totally in awe of the courage of people out there who, like me are dealing with incontinence everyday/all the time 24/7. People were sharing both with me and each other, I was so humbled by it all. I hope to continue to keep this conversation going by keep sharing with you all my appointments and experiences. I hope that possibly you might like to join me on my journey and if you would, that you might perhaps follow this blog for me. There is no pressure but by following you will get updates so can keep up with the trials and tribulations I will undoubtedly have when I go through whatever treatment I get offered. 

So to today’s blog post, which due to me deciding it was a good idea to do in the middle of the night I have already lost half of!!! Tiredness and phones don’t mix so I deleted a large part of it and couldn’t retrieve it. Moral of the story?? Wait until you’re awake before editing your blog!!!

So anyways we as a family don’t have the best track record with family days out. Whether it’s the weather, arguments, stress and planning something usually happens. Yesterday we decided to go to a pick your own place which isn’t too far away, and yes you guessed it out trip didn’t quite pan out the way we’d planned it!!! Being in a wheelchair usually means that we have to plan very carefully, every detail, we can’t really be spontaneous  (which in my case is a good thing anyway as I cannot cope with last minute plans or changes etc).  We have my 8 year old niece staying with us for 3 days and 2 nights while my sister is at a friend’s wedding. My niece is a fruit fiend, having once had a tantrum in Waitrose not for the usual sweets but instead for an apple, and she’s also an outdoor soul. Great combination we thought for this trip where we could pick some fruit and then have some lunch finishing the day off at the garden centre which is just up the road from the PYO. Hitch no.1 came when we realised 2 days ago that dad had a hospital appointment booked at 11.15am so our morning plan had to change so he could attend. We then decided to go after his appointment, have lunch first then pick the fruit; then afterwards if there was still time we’d go to the garden centre!!! After a fairly successful lunch the family all went off picking and I settled in the sun, with a coffee, to read……

This is the life!!!

But 30 minutes passed when back came the family, with no fruit or veg. The crops were bare!!! No ripe plums or raspberries and so my plan of making jam with our bounty were scuppered and no raspberries for the freezer either. 

So what do you do when you can’t get fruit?? Garden centre for cakes!!!! Lol, ok not healthy but instead of health we went for………..

YUMMY

Hopefully our next trip out will be more successful!!!

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

Migraines and Mishaps

I’ve suffered with migraines since I was approximately 4 years old,  but you try telling the schools nurse (we had school nurses when I was at school) that you have a migraine and that you can’t do anything about them when you’re that age.  I heard that I was making them up, or it was just a headache as 4 year old’s cannot suffer with a migraine but it was a mistake that teachers and nurses alike only made once.  When I was young my migraines hit with no warning and the after effects lasted for days.  The only telltale sign that I had a migraine was uncontrollable yawning, a symptom that I carry to this day.  So I would promptly, if I started with the headache, tell the teacher “go and lie in the snuggly corner” was their usual response but falling asleep with a migraine I would really fall asleep.  Comatose was probably more like it, my earliest school memories are being woken up by my mum picking me up after such incidents with a worried teacher looking on and explaining that they’d never seen anyone fall asleep so heavily!!  The other mistake they often made was if they told me that I should take a tablet, it has only been in the last 20 years that I’ve been able to take any at all and even now I still struggle with them.  Projectile gagging and, or various incidents of them trying to get me to take paracetamol tablets really didn’t work.  I think however the worst of my migraine stories happened when I was first at secondary school.  Still having to fight to get people to believe that my migraines were real I went to the nurse to say I needed to go home as I had one.  The usual first response was suggested, that I lie down for a bit before I could go back to class, however my other rather unfortunate symptom of migraines was my rather impressive vomiting skills.  I have never been the neatest of pukers, one rather impressive feat when I was young was managing to throw up right down the stairs from the top to the bottom and unfortunately there are many many other stories of other rather unfortunate incidents.  However on this occasion the school nurse, having not believed that I needed to go home, had left me on my own in the medical room.  I managed to make it to the toilet, which was one good thing, however my aim wasn’t that good.  The nurse returned to me having managed to vomit over the entire wall, toilet and floor in the room.  Funnily enough after that if I said I needed to go home, I was sent home!!

So to my migraines now.  I have two distinct forms of migraines now, one being the same full blown migraine and the other being a manageable migraine which I call a migrainey headache.  It’s the same symptoms but I can usually take tablets in time to stave off having to go to bed for the day.  I can just about cope with migrainy headaches usually having them on and off for a day, but staying just bad enough to be felt.  I still yawn way more than you would normally expect and you can see in my eyes that I have a migraine but I can just about function as normal.  However I have a rather unfortunate side effect of a migrainy headache (because a normal migraine I have to stay in bed for I don’t actually know if I have this symptom with a full blown migraine too) of being even more comically clumsy than normal and very dopey too.  Now today I’ve had one of my migrainy headaches, it’s been there most of today.  This morning while getting ready for town, mum was trying to help me into my cardigan and at the time I also had my crutches instead of my walking sticks.  Mum offered me one arm, I managed to sort out which arm however trying to get it in was rather fun, tangles and turning the wrong way, bag straps over sticks and you have to have a bit of a giggle.  Driving my scooter into town was rather comical, although I think that the sudden urge I had whilst waiting for the crossing to change of pressing my power and surge forward into the traffic was rather more worrying however I did manage to quell that one!!  

I couldn’t work out today if my trigger was the air pressure and humidity or if it was simply my POTS playing up, it might have been both. I rarely know what has triggered one, cigarette smoke is definitely a trigger but that and stress are the only triggers we’ve identified. I have fairly regular migraines and migrainy headaches I have thankfully just got my migraine medication back after a few years without it being manufactured. I’m so glad it’s come back though as it’s the only thing I’m allowed to take and the only thing that works too! I don’t know why I’m so clumsy and ditsy when I have a migraine though but I do think perhaps that might be yet another reason why I don’t actually go out on my own, it’s probably a good thing I don’t really; can you imagine the stories if I did???

Naps are important!!

I have again had real problems with trying to think about what to write.  I have been aware that while I really wanted to connect to people about my disability and issues that I and other disabled people have, I also wanted to review products and share useful things that I have and use to help others and I haven’t had the chance to do much of that.  I haven’t been buying a lot at the moment for various reasons, and have struggled to know whether to review products that I’ve had for a while.  I hope that I can get more reviews in, and I will write more about the different parts of EDS and how they affect people but I think that it will take time and I’d rather write, at least for now, on day to day things.  I have been very lucky and my blog post on falling asleep throughout the day has been published on “The Mighty” and even was quoted in the last newsletter email from EDS UK.  I’m hoping to send more posts and articles into them so hopefully you will see me on there more and more people will find my blog though there.  So for the time being I am again posting on the insomniac side of the CraftyInsomniac!!!

It was very stormy here last night, something that my body and mind do not like.  My symptoms are much worse again because of the storms and I have a severe phobia of them.  So this morning (12.50am to be exact) saw me downstairs on the couch after having migraine meds, pain meds, and a drink listening to my music shaking like a leaf while the sky was continually lit up for hours with almost constant very (to me) scary lightening and the occasional rumble of thunder.  To those who enjoy storms it was, I’m sure, a spectacle.  To me, however, I spent the night on the couch enjoying first my music and then once the lightening had died down my Quantum Leap box set!!  I think I must have had a maximum of 3-4 hours all night.   So I had a really bad night’s sleep last night and it led to today me needing to have a nap to keep going.    But while that was exactly what I needed my body and the universe seemed to be conspiring to let me do anything but take that nap.  I first tried this morning, thinking that as I’d been up all night (pretty much) it would be better to have a sleep and then I could get on with doing my emails and concentrate a bit more on them.  So I had a drink and then settled down on the couch hoping to have an hour’s nap.  Now nothing was particularly going round in my head, it wasn’t particularly noisy  and my pain killers were working as well as they ever do but could I settle, of course not.  I tried but just could not fall asleep, I gave up but of course within an hour what was I doing?  Falling asleep while using my laptop and having a drink, in fact now I wasn’t trying to I could have quite easily fallen asleep.   I would have been very uncomfortable and woken up in a lot of pain but I could have, and was, dropping off easily.  It was lunchtime though so after I’d eaten I settled down again, within 10 minutes the phone rang.  Then again and again, 3 times, you seriously have to be kidding me I thought.

I did manage after this to drop off for a bit thankfully topping up my energy although I know, very probably, that I will still be struggling to stay awake tonight whilst watching TV.  However I just want to add a little side bar here that napping isn’t, for me and others with long term conditions, laze.  No it’s necessary, some days it’s needed more than others and some days it’s just topping up energy while others it is catching up on sleep.  So please when you see someone having a quick 5 minutes nap, don’t jump to the conclusion that they are lazy.  It might just be, like it was for me today, a very much needed sleep.  That is if you can actually fall asleep!!

Boring days and isolation!!

I’ve had a yet another boring day today so thought it seemed the perfect time to share about how isolating disability can be. Since becoming disabled my social circle has become very small anyways, not necessarily through anyone’s fault but more because going out full stop is rarer. Before my disability I was training to be a primary teacher. I hurt my back in the first term and had to give up the rest if the year. When I returned I was part time in a wheelchair and used my walking sticks/crutches the rest of the time. While others arranged evenings out and became good friends I had to shy away, making some excuse so I didn’t seem like I was being difficult. “No I can’t come out tonight, my mum is ill” when really it was I need to go home and lie down to recover from being sat up concentrating all day. Or I’d say “No I’m sorry I can’t go to the pub straight after uni, I’ve got an appointment” when actually it was that I didn’t want to get there and realise no one had thought about access, or spend 20 minutes dismissing ideas for places to go because they werent accessible only to end up not being able to go anyway!! It became so that people didn’t ask me to go because they knew I wouldn’t come, it wasn’t that I didn’t want to it was that it was too difficult to go. Since finishing my degree I’ve not been able to work, I was exhausted and my health and mobility deteriorated and my one freedom which was my car got taken to that scrap yard in the sky. I became very isolated, I couldn’t self propel very far (I now can’t at all) and instead of just being able to go out for the evening or day I had to plan everything. Pacing had to be planned to make sure I had the energy to get the most out of the activity (whatever it was) and access and transport had to be thought of. I had to put upon friends to get them to lift my wheelchair in and out of cars etc and push me when I couldn’t manage. It just was far more difficult to do anything. My really good friends are still there but I don’t get to meet new people and you feel bad putting upon your good ones all the time. 

I think one of the biggest things too is that not going out much has left me limited things to talk about. Most people talk about family, other friends, places they’ve been or things that have happened to them, they talk about work and things on tv etc too. This is not a criticism, it’s just what people do usually chat about. But I don’t usually have those things to talk about. My world is consumed with health issues, doctors and hospital appointments and managing my illnesses. Instead of talking about normal things I have only my disabled equipment and issues to discuss and it might be that the only people I’ve had to talk to all week are my parents (as I live with them) and the only times I’ve been out were to the doctors. It does limit ones conversation rather!!! Imagine a friend telling you all about their new workspace and all you have to tell them is about the incontinence nurse, it isn’t really what anyone wants to hear about. I have some great friends but they live in the “real world” where you go looking at new cars not new wheelchairs. You try not to bore people with all this but then what do you talk about when they ask what your week has been like?? It certainly makes you an expert in talking about the weather, or turning the conversation back to the friends interesting week!!!

 I know that it’s hard to be friends with a disabled person, but it does mean an awful lot to me when people actually stick by me. The ones who’ve visited me when I’ve had operations or who’ve text me because they know I’m struggling are so appreciated. As are those who still ask me out, who will lift my wheelchair and push me around. But what definitely means the most is those who understand that I might not txt all the time because I don’t have anything to say; I might not be able to go out as much or to the same places; but I am still me.  Thank you to those of you who still remember that xx

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!!!

“I’m a human of very little brain and technology just scares me!!”

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).