Adulting

Well it seems that the universe isn’t done with fraying my nerves. 24 hours after last week’s blog pots was published we found out that our car was in need of some expensive repairs. The repairs were going to cost more than the car was worth – just the cambelt change we had been advised would cost us £400 with the best case scenario. On top of that we needed to get the mid section of the exhaust repaired as Jay had gone over a stick or stone and that had removed the exhaust from its mountings. It is at times like this I really can’t abide this adulting shit. I wish sometimes that someone else would swoop in and fix it all but then that would mean I wasn’t an adult at all. At 45 I need to realise the days of someone swooping in have long gone.

Being nervous about my tooth extraction went out the window. Instead Jay and I had come to the realisation that as much as we loved the car we have that this was probably a slide into it becoming a money pit. With one of the hospital consultants I see an hours drive away we need a reliable car. Other than trips to the hospital we do very little mileage. But I can’t be sat at the side of the road waiting for the breakdown service. 

I did a quick search online – this has been how I have found the last two cars. I thought I had found something ideal a silver Peugeot 207 Estate. It looked in good nick, nothing on there was screaming out to me. So rang the garage and this is where its gets bizarre. This garage was advertising on several well known sites yet when the phone was answered it was answered with just a “hello” not a “Hello XXX garage”. Initially I thought I had dialled the wrong number, so I asked if I had rung the garage, to which there was a bit of a pause and the guy at the end of the phone said yes. I then proceeded to ask him if the car was still for sale and if it had a recent cambelt change, full service history. The answer I got was yes the car was still for sale but he didn’t know about the cambelt or where the paperwork for the car was. The bloke sounded strange but I put it down to maybe he just wasn’t the full shilling. I should have taken a breath and realised how dodgy this all sounded. I mean a garage who answer the phone without telling you the name of the business, a car for sale ( and they only had 4 advertised on all the sites) and he didn’t know where the paperwork was. However I was stressed, I wasn’t thinking straight and we needed a car. Jay was dispatched by Taxi to the garage.

Whilst Jay was on route something was nagging at me about the car – my brain had finally engaged. So I did a background check on the cars history. Its cost me 50p and I could look up 5 different cars should I want to. What I found out concerned me, the car had not been on the road since 2017 ( which would mean an 8 year old car in 2017 hadn’t been able to be sold). It had failed its 2017 MOT and the list of fails and advisories were shocking. Ok I admit I had to google what half of them meant but even I knew a sub-frame failure wasn’t good. I messaged Jay and told him to come back. He messaged me back saying they hadn’t been able to find the garage – another bizarre thing, as the guy on the phone had told me the full address was on the website. However Google Maps had never heard of this garage. Thirty quid lighter and very stressed Jay got home with a migraine. He had to sit outside in the cold for a while, whilst I got him some pain killers and anti-sickness medication. He really did look rough.

So back to the computer I went, our options were being dictated by what was nearby and what boot size the car was as I have a mobility scooter and a wheelchair that I need to be able to put in the back. Most cars other than estates and people carriers just don’t have that kind of space. Just when I was about to cry with frustration I discovered a small garage 12 miles away that had a Renault Grande Scenic for sale, this was the next model up from what we currently drive so we knew the boot space was going to be ideal. I showed Jay the photos and I then rang the garage. This time I was told the name of the place I was ringing, which was a good sign! I then had a chat about the car and asked if the cambelt had been changed. The guy said no but it would be changed before we bought it. 

I did another background check it was 22 days without an MOT and probably about the same for car tax. I looked through its MOT history it had passed it’s last MOT with no advisories ( for those of you in the USA etc who are unfamiliar with the UK system cars have to be checked every year by a garage after they are 3 years old. This is to check it is safe and its emissions are compliant with the law. Advisories are things the garage notes that tells you although it didn’t fail the MOT on those points they will need repairs before your next MOT.) It had failed MOT’s in the past but all the work needed to ensure it passed and all the advisories had also been addressed. 

The problem was we had been advised that our Cambelt could go at any moment and we were only using the car now for essential travel. Where we needed to go was out in farming country and was down tiny single track roads. Should the Cambelt go out there we would effectively be up a certain creek without a certain paddle. Thankfully my parents had text me to let me know that they were up at their caravan ( about 3 miles away from us) so I rang them and explained the problem. They came to the rescue with my dad taking us over to the garage to have a look at the car. We took Dembe with us and he was such a good boy, as he isn’t brilliant in the car as he can whine a bit but he barely made a sound.

As we pulled up the the garage I could see that the owner had pulled the car out onto the tiny forecourt for us. Believe me I have travelled an hour to see a car at a garage in the past and found it at the back of the lot hemmed in by other cars despite them knowing we wanted a test drive! So that was another tick in the box. We had a look at the car, it was perfect for us. The boot was enormous and technically it is a 7 seater as there are two folded down seats ( completely flat ) in the boot. The car is big enough to take Dembe’s crate and my mobility scooter un-assembled. My mobility scooter comes apart so it can fit in the boot of a car. 

As we were happy with the car the deposit was paid and now we play the waiting game. The car needs an MOT and whatever work needs done for it to pass, if it needs any. It will be having a full service, the cambelt changed and the rear drivers side passenger window fixed. It’s an electric window which isn’t working, not that we open the rear windows with Dembe in the back. 

I am now going stir crazy as although Jay is still using our current car to take Dembe up to the common for his walks, I am not going with him as if the car breaks down I can’t walk home. I don’t have the ability or strength to walk should that happen. So I am currently going stir crazy as I haven’t left the house since Friday afternoon. Normally I go out of the house in the car about 5 times a week. That drive out onto the common, even though I just sit in the car, keeps me sane. It gives me something different to look at. I am at the point now where I just can’t wait to get outside. Of course this week I had a load of appointments my hospital appointment was booked for tomorrow so that has been cancelled. I was supposed to be at physio today but again its been cancelled due to not wanting to drive the car that far. The only appointment that is still going ahead as planned is my dentist appointment Friday for my tooth extraction. If we don’t have our new ( 2nd hand car) here by then I will take a taxi. 

Whilst sorting out the replacement car I ignored the fact that I had a UTI brewing, which caused me loads of pain over the weekend and I am only just feeling back to normal now. Thankfully I already had antibiotics in the house so as soon as I realised it wasn’t just an irritated bladder I started taking them. So Saturday afternoon I ended up having to go to bed as I felt so ill.

So we are on the countdown now to getting the car, I just can’t wait to get outside and see something other than my home and the garden!

what’s a cambelt?

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It would be you

Yesterday was our 18th Wedding anniversary, we celebrated in style with a planned trip to hospital where I was booked in for a short Synacthen test ( as my cortisol levels were low or rather were in 2015 but my old consultant had never bothered to conduct this test and I had found this test result on going through some old letters) and a caffeine infusion. As this had all been booked in last Thursday by my hospital consultant we had presumed things would go smoothly. How silly we were, nothing ever goes smoothly for us.

The short Synacthen test is supposed to be conducted at around 9am in the morning when your baseline cortisol levels are at their highest. In 2015 I had been tested at 10.15 am just to check out the level. The cortisol level was found to be 107, I have written about this in a previous blog post. Basically my old consultant had said in a letter to my GP that he would run the short Synacthen test…..like a lot of things he said it never came to fruition. He promised to do a lot of things and never actually did, which amongst many things was the reason why I left his service. When I showed my new consultant ( new as in from December 2015) this letter the test was booked in for the following week.

When we arrived at the hospital yesterday immediately we asked about getting the short synathen test started and no one knew anything about it. I had to keep asking for anyone to take any notice. In the end they had to ring my hospital consultant to confirm he wanted this test to be completed. This was not my consultants fault whomever was supposed to have booked this onto the system hadn’t. The caffeine infusion was showing but not the shirt synacthen test. There were also issues with the caffeine infusion as the drugs had not been brought up from the pharmacy. So before we even got started the phrase piss up and brewery were already rattling around my head.

you can find info on the test here https://www.netdoctor.co.uk/medicines/liver-kidney-urinary-system/a7597/synacthen-tetracosactide/

A set of obs were done and then they said that they would put a cannula in and send me off for a coffee whilst we waited for the caffeine to arrive and my consultant to confirm he wanted the Synacthen test performed. I had to shoot down the idea of putting a cannula in early, its been done many times before and all that happens is it either blows or the vein collapses and the site can’t be used. We then have to go back through the fun of finding a vein that will co-operate. Thankfully after the staff talked  with the duty doctor, I was believed and the attempt at getting a cannula in early was dismissed. 

The time was now 9.50am, we had left the house at 7.20am, our dog sitter had to arrive at our house at 7am. The promise that we would be home by 1pm was starting to fade. The short Synacthen test takes an hour, the caffeine infusion takes two hours. We’d been at the hospital for an hour and were no further on than when we first arrived. Jay wheeled me down to the cafe where the queue was out the doors and there was no spare tables. Jay got us a drink from the newsagents and he got himself some breakfast in the form of a pasty. We got back to the waiting room at 10.30am. At 10.45am I told Jay that if we weren’t in the treatment room by 11.30am I was leaving. My head was having a bad CSF leak headache day. Being in a wheelchair means I can’t lie down and the chairs in the waiting room all had arm rests so it meant I couldn’t lie on those either. I tried to distract myself by doing some embroidery but the pain was making it harder and harder to concentrate. At 11am I asked Jay to ask the nurses if I could have some pain relief, just some paracetamol and oramorph. Normally I would bring my meds with me but for some reason I had forgotten.

At 11.20am I sent Jay into the treatment room to ask the nurses if there had been any progress on the caffeine infusion, I had given up on the synacthen test taking place. We were told it was all ready for me and to come on in. The nurse in charge brought me over some pain relief two paracetamol and codeine. It really pisses me off when hospital staff who despite seeing your prescription list decide that your pain doesn’t warrant what you would take at home. I hate the fact that hospital removes all autonomy, I manage my conditions better than any doctor or nurse ever has, yet when I go there they assume they are the experts. I pointed out that should I take the codeine I wouldn’t shit for a week and yes I used that language – because I had been sat in my wheelchair for 2 1/2 hours at this point and was in a serious amount of pain not just from my CSF leak but also my hips and spine. The codeine was binned and I got the oramorph I had requested.

I was then informed that they were going to now do the short synacthen test. Looking back now I believe they still didn’t have the caffeine from the pharmacy at this point and were doing this test to pacify me after basically doing nothing for the last two hours. You can imagine the shit they would have given me if I had rolled in 2.5 hours late for my appointment yet the same courtesy wasn’t extended to me. I am a massive supporter of the NHS, I am terrified at the Tory dream of turning it into an insurance based system but when there are 8 staff stood around chatting – and no it wasn’t about patients then you see that something really needs to change. I don’t want patients to become consumers or clients but I want them to be treated with the same respect that the doctors / nurses all seem to demand. They don’t seem to realise that there is a life for the rest of us outside of the hospital.

The first attempt at a cannula site was a bust, the vein blew . This was the state of it last night, the bruising is much worse this morning but thankfully it doesn’t hurt

The second attempt was fine but as soon as the Synacthen was injected I didn’t feel right . Sometimes I can feel a bit weird / light headed when blood is being drawn or I am getting an injection. Within a few minutes it usually passes. This however didn’t pass, I started to feel sick and dizzy. Then out of nowhere my face started to burn, it felt like it was bright red and was stinging. I said to Jay “is my face red?” he replied ” yes it is but it’s very hot in here”, I tried to let the growing sense of unease go but at the 15 minute mark when I was feeling more and more out of it I asked Jay to get a nurse and let them know I wasn’t well. All the sounds in the room had become too loud and I could smell a very strange smell, like cooked liver and over boiled veg. I kept complaining to Jay about it but he couldn’t smell it.

After seeing them stood around quite a bit all morning suddenly all hell broke loose. My bed was surrounded by 6 staff including the treatment room sister. My Obs were being done and piriton (IV) was drawn up. My normally low blood pressure that sits at 100/70 -90/60 was now 147/98 unheard of for me. My body temperature was now 37.9 having been recorded at 36.6 at 9.30am. My pulse was irregular at racing at 91bpm. I told the Sister that my blood pressure is never high and was told I was anxious due to having an allergic reaction. I couldn’t be bothered to argue as I was very frightened because I just felt so very unwell. Initially the IV piriton helped but after 10 minutes I could feel the reaction starting to come back as my face started burning and I started to feel very ill again.

Jay went and got the nurses attention again and I was given IV steroids. I have never had a reaction so severe that I needed steroids. This had been my worst reaction to date. Within 20 minutes of the IV steroids I was back to normal but then we had to wait around and be observed to ensure that the reaction didn’t start up again. I was fully checked over by a dr and at 1.50pm 5 hours after we arrived I left the hospital, with no caffeine infusion. I declined the infusion as I just wanted to go home and the staff were also concerned that although I have had the infusion before after reacting to the synacthen it was more likely I could have another bad reaction.

We finally made it through the front door at 3pm. A few hours after being home I emailed my hospital consultant who told me in all his years of being a doctor I was the first patient he has known to react to the synacthen test and then he said ” it would be you”. Basically if there is a weird reaction to have I’m your girl. He also backed the decision not to have the caffeine infusion.

I have been left with raised red bumps / rash on my face which always happens after I have an allergic reaction. That will fade over the next two weeks and I will get very dry skin which will peel off as the rash is fading. It’s a bit sore from being so dry but it’s still nowhere near what I went through yesterday.

This morning I feel like I have been run over by a bus. My HS has flared up on both sides of my groin and I have a serious amount of joint pain. For the next few days I am going to take it very easy.

Human Barometer

We often joke in the EDS community that we are the human equivalents of Barometers. Any sudden changes in air pressure and you’ll find us suffering with a myriad of problems such as migraines, excessive joint subluxations (partial dislocations), dislocations, joint and muscle pain. This week I feel like I have had them all.

 

Monday started with a bang, I felt like someone had smashed me in the face with a shovel. This lead to me spending most of the morning lying in a darkened room. Until I suddenly had a brain wave and decided to see if putting a soft neck collar on would help at all. I have always held a deep suspicion that my migraines are triggered by my neck being hypermobile, I get a lot of pain and stiffness in my neck overnight. I always wake up with a migraine, very rarely do they start when I am up and about during the day. Within minutes of putting the collar on my head pain had reduced by half. Within two hours I was pain free but exhausted and still feeling sick. However anything was better than having the head pain.

Tuesday started on waking with a gnawing pain in my coccyx – right between my bum cheeks to be honest, hence why there are no photos! I have had massive problems with my coccyx this year after slipping on the snow and ice back in March. At the time I was much more worried about my head as I managed to crack it on the back door step. The lasting injury has been to my coccyx, which has resulted in me having to buy special cushions to sit on and to lie down in the lounge whenever I can to take the pressure off. I’ve lost 2 ½ stone over the year and you’d think that my joint pain would be getting easier but it isn’t. The coccyx pain is very uncomfortable, Tuesday it joined in with severe lower back pain which lead to me giving up and going to bed a 4pm. Only after applying my Tens machine for 4 hours did I have any notion of relief. It really was exceptionally painful and made me feel sick. No matter what pain medications I took the pain remained causing my buttocks and the backs of my thighs to spasm. I will be honest I really didn’t know what on earth to do with myself. It wasn’t even particularly stormy here yesterday just a bit gusty but obviously the weather and the air pressure were drastically different to the stable weather – but way too hot in the summer.

 

Today (Wednesday) the UK is being battered by another storm and my body feels like it spent the night being battered by a shovel. Since waking various parts of my body have been covered with a hot water bottles, with very little effect other than to make me sweat a lot as despite the fact the weather is very windy outside the temperature is very warm.My body is overheating constantly at the moment which is leading to me dripping with sweat at the drop of a hat. Either that or I have hot the menopause! So what hurts today? Today as most days I have pain in my lower spine and coccyx, my fingers are swollen, stiff and sore. My ribs feel like someone decided to attack me with a baseball bat whilst I slept and the soles of my feet feel like I’ve been hit with a 

with a baseball bat whilst I slept and the soles of my feet feel like I’ve been hit with a piece of 2 by 4 ( wood ). Other than that, I am groggy as hell with the constant waking up last night to take more pain relief. This is not a good day but I have been expecting a run of bad days after having a reasonable week last week. It’s the way it goes plus add in a few storms and my body reacts badly to the change in air pressure.

 

 

I forgot to mention that my shoulders are slipping in and out of  their sockets, making a terrific crunching sound as they do. Today nothing other than just surviving will be done. When I say just surviving I mean lying on the sofa hoping at some point the pain relief I have taken kicks in. There will be no enjoying myself, doing things that I like to do. It will be a case of just riding it out. That’s the way this chronic illness lark works. I may have a run of a few good days but they will be followed by several if not more bad. Which is why when its good ( when I say good I mean better than a bad day) I tend to cram as much in as I can.

I’m sick of this pain, especially when it’s like this and no painkillers touch it. It’s not a pain where you scream and shout it’s a nonstop constant bone gnawing pain that escalates as the day progresses. Sometimes it takes my breath away, it makes me miserable and snappy. I hate the way it can completely change my personality from laid back and kind to nasty and angry at the world. Unfortunately those closest to me bear the brunt of it, with me losing my temper very easily. A technique I have learnt to avoid me lashing out is to just go quiet and not speak. That way I can be horrible to those I love the most.

 

Thursday brings more storms and a trip to see my hospital consultant which is more than an hour away by car. It’s a crack of dawn appointment as well so 90 minutes after this blog post is published I will be on the road. I will have had to get up at around 4am so that I can pace myself whilst getting washed and dressed. I am not looking forward to using my wheelchair as sitting upright at the moment is so painful, added in the 2 hour car journey (there and back) and I will be wracked with pain….again.

I do have a lot to discuss with my consultant, I haven’t seen him since March, it’s a necessary evil – he’s not evil he’s lovely, just the journey is torturous. I have developed numerous issues since I saw him last and I need to get to the bottom of them. One of them is the possibility that I have got Sjogren’s Syndrome ( I have had dry eyes for years but the eye drops are no longer working, my mouth is dry so I am getting numerous cavities and my tongue is sticking to the roof of my mouth when I talk). I need this to be looked at as my eyes are just so painful and with my pathological hatred of the Dentist I need the cavities to stop.More information on Sjogrens syndrome here.

This is such a down beat post and for that I am sorry. I had such a lovely week last week seeing friends and managing to make some bits and pieces.

 

The Christmas wreaths had been half made since August so I managed to finish those by adding hanging loops and bows.

 

I also made a number of Travis bags.

A trip of a lifetime – the details, part 3

I am slowly starting to bounce back from our trip to Stoke-on-Trent last week. I can’t believe that a week has gone by already, last week was a peculiar week as in some sense it felt like a very long week and Monday the day of our trip seemed to disappear in a flash.

 

There was an awful lot of planning involved for our trip, medication supplies, drinks, snacks, directions, dog sitters (thank you Imogen) and just general stuff like making sure we had fuel! We got up a little after 3am on the Monday of our trip. Hubby went straight out with the dogs so that they would have a good run around before we left. We planned to be back home by 7pm that night so that they could have their evening walk also. This was going to be the longest amount of time that we had ever left them in someone else’s care and we were a little stressed out. What made it worse was that when we went to leave the house at 5.30am both Frankie and Willow kept attempting to escape and come with us. It really upset me to have to keep pushing them away from the front door. They are never normally bothered when we leave them. We have left them like this with Imogen on a couple of occasions. I don’t know what had unsettled them but it made leaving them very hard and I was riddled with guilt.

 

It was absolutely pitch dark and quite cold when we set off. There was barely any traffic and we made really good time. I had deliberately not drunk very much as otherwise we would have had to stop constantly. We made our first stop at around 7am at Gloucester services. The one that looks like the house where the Teletubbies live. I have to say the services were excellent for disabled access. There were also numerous family changing rooms for babies and young children so either mum or dad could change a nappy. In  the disabled toilet I used there was also a shower, with a proper shower chair. There was also more than enough room for me to be able to turn my wheelchair around and be totally independent, rather than having to get hubby to rescue me and pull me out, as normally with disabled toilets there is just enough room to get you into the cubicle but there is no way you can turn your chair around and get back out again without assistance. Another good thing about the toilet was that it was gender neutral. This is a major issue when I go anywhere that if the disabled toilets are within the gender specific bathrooms I really struggle. Manually moving my wheelchair can cause my shoulders to dislocate, it is also extremely tiring. So if I am having a rough day I don’t want to have to navigate a disabled toilet alone because Mr Myasthenia Kid can’t come with me.

 

Gloucester Services Selfie

 

We made really good time all the way up until just outside of Birmingham, for the rest of the journey we didn’t get above more than 40 miles per hour if that. It was so bad at one point I was starting to panic that we weren’t going to get to the Emma Bridgewater Factory until after the tour we had booked to go on had started. There are some major works taking place on the M6 and then once through them we hit road works in Stoke-on-Trent. After panicking that we had taken a wrong turn in Stoke-on-Trent we pulled up in a disabled spot right outside the factory gates at 9.50am. The relief was palpable, we were going to make the tour and we were going to be able to do the day as we had planned.

 

The only downer about the day was being approached by a religious nut just outside the factory gate.

 

Factory Gate

 

She had watched as Jay aka Mr Myasthenia Kid had got my wheelchair out and wheeled me in front of the sign (where everyone has their photo taken). She then proceeded to thrust a leaflet into my hand. I gave it a quick glance, realised that it was nothing to do with the Emma Bridgewater Factory and that is was highly offensive codswallop purporting that disabled people etc could be cured through the power of prayer. It also claimed that I was disabled through not having a strong enough belief in God. I was absolutely livid that she had deliberately targeted me, she made no attempt to give her disgusting leaflet to my husband. Had we been anywhere but outside the factory the place that I had wanted to go for at least a year, I would have told her to swiftly fuck off. I believe in religious freedom but the courtesy must be extended to me to allow me to live my life without your beliefs foisted upon me. Especially when they were that bloody vile. I gave her back her leaflet and just said “no thank you” through gritted teeth. One fruitcake was not going to ruin my day.

 

Outside the factory

 

The only access issue I found with the Factory were the doors, a lot of times I couldn’t get through them unaided due to the width of my wheelchair and possibly Mr Myasthenia Kids poor driving skills. This wasn’t a problem as the staff were absolutely marvelous and would come and help without being asked and obviously I wasn’t unaccompanied where that may have caused me a few issues. What we have to remember is that the factory dates back to around the mid 1800’s. To do a major revamp on the factory would mean to lose a lot of the character of the place. It isn’t needed when you have so many people, including fellow visitors there to help you out. Everywhere else in the factory was really well thought out, no stairs just ramps, lovely and flat.

 

The factory Cafe

 

There were six of us in our tour group and it took us a good hour to get around the whole building.

 

One of the slip casters

 

The first place we visited was where the slip (clay mixed with water) is poured into the casts. All the people working in here were really nice and would bring things over for me to have a look at as due to the wheelchair my view was obstructed on occasion. Our Tour Guide Jane was also really good, answering all my questions and showing me things that I wouldn’t have got to see without her making a special effort. All the staff no matter where we were in the building were unfailing polite and would stop and chat about what they were doing. I did feel very sorry for them as there are numerous tours a day, with some very large groups, at times they must feel like animals in the Zoo.

 

All the way around the factory there were shelves of earlier Emma Bridgewater pieces which was really lovely to see, along with displays of new designs

 

Factory Display

 

We saw every single aspect of the pottery factory and it was incredibly interesting. You really don’t realise how many pairs of hands your mug or plate might have gone through. We saw the Fettlers, the kiln workers and the decorators to name just a fraction of the team.

 

Decorators station

 

The tour took about 70 minutes and I would love to do it again as there was so much information to take in and due to the excitement of being there etc I haven’t remembered an awful lot which is disappointing!

 

After the tour I had booked us into the Pottery Cafe. This is where you get to try your hand at decorating your own pieces. There are a range of different bits and pieces that you can choose from to decorate from egg cups to gallon teapots. I was incredibly lucky and found a Salt Pig which are as rare as rocking horse poop as the factory no longer produce them. It wasn’t even on the price list in the cafe. I also decorated a pint mug and Jay decorated a pint mug. The staff come over and take you through everything, how to correct mistakes, how to choose the ceramic paint colour and how to apply the paint onto sponges if you are using them. Each table is set up with a tablecloth, a mug full of paintbrushes and bowls of water, pencils and little sanding blocks to erase stray bits of paint should it happen. Here are the items we painted and they should be back with us by 27th November. I can hardly wait to see how they have turned out. Emma Bridgewater won’t be offering us a job decorating her products anytime soon.

 

Pint Mug

 

Salt Pig

 

Jay’s Pint Mug

 

We spent around 90 minutes in the Pottery Cafe and we both thoroughly enjoyed ourselves. We both have a newfound appreciation for the level of skill needed to decorate spongeware. It must be very nerve-wracking for the staff the first time they have to do a personalisation. I tried a bit of writing on the bottom of my salt pig, just R & J 30-10-17 and it was awful! The letters are always so crisp on a personalised mug I’d love to know their secret.

 

After our decorating exploits we hit the shop, we were literally like kids in a candy store. We had saved up some money, plus both sides of our family had given us cash for our birthday and Christmas presents. It was both of our birthdays last week. So we had a crazy amount of dosh to spend, it will probably never ever happen again but it was nice to be able to spend the money on stuff we wanted and not have to worry about how much it was.

 

Our haul included

 

Storm Lanterns

 

Gold Christmas Carol Mugs

 

Christmas 1/2 pint mugs

 

Christmas Carol Plates

 

We also picked up some bargains in the seconds outlet. Once we were all shopped out we went for afternoon tea in the cafe. This was also where I met a friend and her husband for the first time in real life! That was an extra special bonus. Thank you for coming to see us xx

 

By 3pm both Jay and I were really starting to tire and we had a long journey home. Stoke-on-Trent through to the other side of Birmingham was an absolute nightmare. Thankfully we only had one stop on the way home, which was a quick toilet break and fuel for the car. After Gloucester the traffic was very light, we had been dreading the homebound journey as we felt we could get caught up in rush hour traffic somewhere along the way. We finally made it home at 7pm, the dogs were taken out and then we just collapsed into bed. It has taken me until the end of last week to get any energy and brain function back. I am still getting tired much earlier in the day but it was so worth it. I can’t wait to go back some day.

 

The Pain Game

I thought that I was well and truly done with the level of pain I have been experiencing for the past ten days. There has been no let up other than when I catch a break through falling asleep due to sheer exhaustion. It’s not a horrendous level of pain probably only a 6 or 7 out of 10 it is the fact that it is never-ending that is driving me to the brink.

My hips, knees and pelvis are all currently conspiring against me, each in competition with each other to see who can hurt me the most. When one eases off another goes in for the kill. I can’t actually remember ever having pain at this level for this amount of time. It’s a bone deep gnawing pain, not enough to make you cry out but enough to make you consider weeping if only you had the energy left.

I have racked my brain trying to work out what is behind this pain escalation. As my mobility is limited it’s not as if I have taken up hill walking or Zumba classes. I haven’t fallen or  done any Pilates (since the pain started) or sat in a way that would put stress on my joints. There hasn’t been a constant change in weather fronts (the weather plays a massive role in my pain intensity) or a  change in medication. There is nothing I can put my finger on that I can say “that did it”. Pain without a cause is frustrating, as how do you avoid it happening again? I don’t mind if I have done something that causes a few days of pain. I can live with that, it is when my body is punishing me for no apparent reason that I begin to despair. When will the pain end or as in my case when will the pain subside to a level that I am used to and I can cope with day in day out?

My vast quantities of pain medication are not working, which would normally be the case if I was suffering from nerve pain. This isn’t nerve pain as nerve pain has a completely different quality. Nerve pain or my nerve pain tends to be a burning, pins and needles pain. This is deep within my bones. My hips currently feel like they have been replaced with metal spikes and every movement or position is searingly uncomfortable. My knees to be fair aren’t too bad they are a dull ache only catching me out when I go upstairs, then the pain makes me squeak. My pelvis or to be more anatomically correct my iliac crests feel like someone has taken a hammer to them and my lower back is probably painful because my gait has been so badly thrown with everything else hurting.

I know the pain is bad at the moment as I am struggling to concentrate for more than a few minutes at a time. I am also waking every 2 hours, unable to keep comfortable when lying in bed. Sitting provides some relief for around an hour and then the pain comes roaring back. I could quite honestly weep I am so worn down with it all. I just don’t know how to get myself out of this pain game at the moment as I have explored all my usual tactics and nothing is working. Heat provides a small amount of relief until I become too hot, changing positions is fine as long as you aren’t trying to sleep but nothing brings relief for very long.

Remarkably so far it hasn’t brought my mood down too much yes I am fed up but not depressed, there is a world of difference between those two states. Whilst it would be perfectly understandable for a person with long-term chronic pain to have periods of depression I am just seriously naffed off.

I can’t believe that years ago I would manage to work whilst suffering this level of pain. I wonder if I have become more aware of pain or if it is just now that I am at home 24/7 that there just aren’t enough distractions. When you are running a department of 130 people and fighting battles to be treated with dignity there aren’t masses of opportunities to let the pain in. At that point even acknowledging the pain would have meant I would have lost the war. I did it all on massive doses of codeine and later oramorph when I developed bursitis in both hips and plantar fasciitis in both feet.

I am starting to think maybe on the pain front I gave up and now I am forever fighting to be back in control. To feel like you have given up is almost too much to bear. I still have doubts about my chariot (wheelchair) I blame myself for allowing myself to give in and use it when I should have pushed through. In reality I know that wasn’t a possibility. Not using the wheelchair would mean never experiencing the outside world again. Even if all I do is now get to look at people’s arses due to my eye line. I don’t know if it is the feeling of giving up or a feeling that I have failed as a human being. That I am no longer able but dis-abled.

The first part of this post was written in the midst of a massive pain flare up. Yesterday the pain settled, possibly due to a mega dose of B12. Some doctors would argue it was coincidental but I don’t think so. Why after so many days of pain would it settle 12 hours after the injections? Now however I am having a bad bout of insomnia. Chronic illness is so much fun you never know what will happen next. I was naffed off with the pain before but now I am seriously pissed off as tomorrow, well in fact now today, I am going out for a few hours with Jay (hubby) for the first time since August (2015). And yes you read that right.

Unfortunately insomnia before a big event and believe me leaving the house for a few hours when it’s not a medical appointment is a huge event, seems to send my adrenaline levels soaring. I become really twitchy and unable to settle. I have been trying to wind down since 7pm, now 6 hours ago. I have got up, I have watched TV, I have read, I have listened to the radio, I have meditated there is nothing I haven’t done to try to drift off. Yet sleep remains elusive. The good news is the pain really has settled it is the best it has been in months. I am just cross with myself that I didn’t recognise the signs of B12 deficiency, it is not as if I haven’t been down this road before. It’s just this time my left leg didn’t start burning.

The other bonus is of course I get to finish my blog post a day earlier than normal. I get to put it to bed, pun intended and do not have to worry about being too exhausted to complete it as I went out on a jolly.

I really hope at some point the sandman visits, otherwise Jay will have a grumpy Rachel to deal with whilst negotiating the city centre pushing me in my chariot.

And Breathe part two

I am exhausted, I have been “normal” and been out of the house two days in a row and not for completely medical reasons.

For regular blog followers who don’t follow the The Myasthenia Kid on Facebook, my mum’s operation was cancelled on Monday 12th at 3pm, she has now been booked in on 28th April. So fingers crossed it is third time lucky. It is quite stressful waiting for her to have this operation. She needs it so desperately and the pain is so bad for her. Every day I worry she is going to have a bad fall and end up breaking bones. So we wait and hope that it will happen on 28th.
I had my dermatology appointment today for my dodgy mole. I had two dermatologists look at it and they are not concerned at all. I have been discharged from their service however if I have any concerns in the future I am to contact my gp. I have many raised moles on my body so I don’t think it will be the last time I will be seeing them. The consultant I saw was really lovely, the registrar was not very welcoming – not rude but you could tell he was either shy or just felt out of his depth with my medical history. Before even looking at the mole he was panicking about local anaesthetics as they don’t work very well on me. He asked me how I manage to have dental work, I told him most of my dental work is done at the speed of light as I burn through locals very quickly. He went quite pale.

He seemed quite unprepared as one of my moles I needed checked was in an intimate area. He asked me to undress but provided no blanket or gown for me to cover myself with. When I told him I wasn’t going to sit half-naked unless I had something to cover myself up with he quickly went and got me a gown. I was really surprised that he thought this was ok, when moments earlier he was asking me if I needed a chaperone, despite my husband being in the same room. It seemed he was more interested in keeping himself protected than protecting my dignity!

As both my moles were ok we were in and out in around 15 minutes. I had booked a dog sitter for 4 hours – just in case, so hubby and I were furbaby free (furniture would not be eaten and the dogs would not be serenading the neighbours). We headed off into the city to have a mooch around the shops. It was the first time we had been out of the house together for a non medical reason for probably 6-12 months. No that wasn’t a typo that’s how long its been. I actually can’t remember the last time we were out together alone.
I also went out yesterday for non medical reasons (as in no gp or hospital appointments). My friend H took me out to the local garden centre. It was quite a big deal, as previously when friends have taken me out I have used crutches or my sticks rather than my chariot. I have a really big issue about my friends seeing me in my wheelchair or me needing them to push me. Yesterday marked the first time ever that I had been out in my chariot with a friend. I was very nervous about it. H needed a crash course on assembling the chair and she picked it up like a pro. I decided that I was going to propel myself as doing that means whomever is with me can walk along side me and chat rather than have me have to turn around and speak to them. You don’t think about these things until you are in a wheelchair.
As its been a while since I have been out in my chair I had forgotten exactly how wheelchair unfriendly the outside world is. I managed to leave a nice black line down a newly painted white plinth because it was just a few millimetres too small for me to get past comfortably. I also managed to destroy one Wellington boot stand. Normally that would leave me mortified but for some reason it drove me to hysterics. I wasn’t even embarrassed that I had knocked it over. Poor H had to hurriedly pick them up whilst I negotiated an even tighter right turn. Luckily that was the extent of the damage caused.
I stayed out for 2 1/2 hours (go me!) it left me utterly exhausted. I went to bed for two hours when I got home but as usual when I have been out I return wired tired / amped. My head is buzzing from the excitement of being out of the house my body is wanting to melt down. I battled on until 7pm and then crashed spectacularly, falling asleep, well actually it was more of a horrific postprandial episode that I didn’t come around from until 10pm and then it was only briefly.
For some reason the postprandial collapses are worse than normal and due to one starting right now I am going to leave this and come back when it’s over!

Ok so I am back its is getting a bit boring now having to rest / collapse every time I eat. It has been really awful since yesterday. My heart pounds so hard in my chest it feels like my ribs are going to shatter. I become unbelievably tired as my blood pressure drops, today I recorded 79/40 just before I had to go to sleep as I couldn’t stay awake any longer. It seems to start my heart off in a funny rhythm where it pounds in my chest for the rest of the day grrr!

Anyway I digress both yesterday and today I have had a lovely time in the outside world. It makes a change from the four walls I normally view. I am beyond exhausted and I feel like I am having an out-of-body experience.

My own hospital appointment for a week of tests has been pushed back until May at my request. There was just too much going on this month for me with mum’s operation, my dermatology appointment and my sisters scan for her baby. There was no way my blood pressure was going to be my normal low, it would be raised with the stress of it all.

So I am a very tired but happy bunny today.