Recovery is dragging

I wrote last week about the consequences of going out and I clearly didn’t have a clue how bad things would be as I am still suffering after my day trip. I think maybe it is just rotten timing that ever since I have been feeling very tired and run down. This last Monday I ended up with a hideous migraine that knocked me flat on my back for over 12 hours and had Mr Myasthenia Kid have to come home from work to look after me. I am glad I am out the other side of that but it has shocked me how battered and bruised I am still feeling for having a few hours out of the house.

I am guessing having a solid six hour block of socialising, driving a scooter and having to use a lot of brain / muscle power probably wasn’t the best idea. The longest I am normally out for is probably 90 minutes at an absolute push and that will leave me more exhausted for normal for up to two days after. My days when I don’t leave the house are in cycles of rest and activity. I have to pace myself or I end up paying for it. It hasn’t helped that there have been appointments that I have been unable to not attend – ringing up and explaining to the receptionist that you need to re-book because you are shattered never goes down well. There isn’t really a word in the English language that accurately conveys the level of exhaustion because we overuse words like fatigue, shattered, tired etc. For me it gets to the point where I can feel like I am having an out if body experience or that I am dreadfully hungover combined with feeling so utterly exhausted it can be really hard to motivate myself to move. 

I have been on my embroidery machine and sewing machine a lot as I am making Christmas gifts for friends and family. I know it is only October but I get panicky if things aren’t made and then I start to feel stressed which means I no longer enjoy making the items. At the moment I have been limited to an hour or two a day, which doesn’t help me get loads done but it is the longest I can sit without the pain becoming so intense that I have to lie down the rest of the day or concentrate for. Obviously on the embroidery machine when it is stitching out I don’t have to concentrate on anything but I do need to be switched on enough to know what step comes next as for the first time I have been using the embroidery machine to do applique and I am really enjoying it.

I know I should have taken it easier last week but even after 12 years I think I can push it and there will be no consequences. I never ever learn. Maybe I simply refuse to.

This week my body has just thrown a hissy fit and ensured that I can’t carry on ignoring it when it sends out distress signals. Every bloody condition I have is flaring out of nowhere – Hidradenitis Suppurativa two abscesses after at least a month to 6 weeks without anything, Arthritis hands as stiff as can be, Nerve Pain left leg is burning which it hasn’t done in years, Tinnitus (so loud I am struggling to hear anything else) Migraine and now a headache every day since, nausea, IBS, adhesion pain, Muscle Spasms in my back and feet you can always guarantee will make me swear like a sailor literally everything is kicking off at the moment. I always find pain adds considerably to the fatigue. 

This isn’t a woe is me post or an attempt for sympathy, I am just explaining how things are at the moment and why at the moment I am struggling to come up with dynamic or scintillating posts. I am finding it hard enough to follow a conversation let alone put an intelligent blog post into words.

I do count my blessings though, Dembe is my hero. On Monday when I was so sick with my migraine he wouldn’t leave my side at all. I thank my lucky stars I have him as even on the days when I am really suffering and thank goodness they are few and far between he is stuck to me like glue and always makes me smile.

So I promise to attempt to be kinder to myself over the next week and get back on an even keel.

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Migraine

I had wonderful plans for what I was going to write this week but at 4.30am I was struck down by a migraine. Thankfully it is on its way out, the attacks have been shorter in duration since I worked out my migraines are triggered by instability in my neck when I am asleep. As soon as I know a migraine has started I put on my soft cervical collar and keep it on for several hours. When I can I add in 2.5mg of diazepam to relax the muscles that go into spasm on my forehead. Although the length of time I suffer with pain has shortened the after effects last all day. I am very limited with screen time. Hence why this is such a short post.

To make up for the lack of words I will spam you some more of Dembe, who is an absolute angel when I am poorly. He stays by my side and will only start behaving like a 7 month old pup once I am up and moving around.

Hopefully normal service will resume next week.

Brave

I don’t class myself as brave although I have had plenty of people in the past tell me I am. Most of the time I am a quivering wreck, my anxiety has been awful of late, if there is nothing to worry about my brain will find something and keep me awake at night about it. Dealing with people, crowds, noise or even just being in the outside world alone fills me with terror. Yes on many occasions I force myself out of the house and attend appointments alone, dropped off outside but once out of the safety net of the car I am on my own. After over ten years of being pushed everywhere in a wheelchair ( I don’t have the strength or the capacity in my joints to move under my own steam without dislocations and severe pain, oh and the risk of fainting) today I took a brave step into the outside world alone and went to my hospital appointment by myself. I have never done this. I have never seen a hospital consultant alone in the whole history of me being sick. This is huge.

Now a few people have got hung up on the fact that I didn’t travel the hours journey to the hospital by myself. Having pointed out the fact I don’t do crowds, loud noise, bright lights or social situations alone, what the hell do you want from me people? Public transport is shit, I just couldn’t have done the journey on my mobility scooter from my town to the city. Taking the bus or train would have meant multiple changes in places I don’t know. I’d have had a fucking heart attack, there isn’t enough valium in the world to get me through that. 

This is the person who freaks out about calling for a taxi let alone getting in one. One small step at a time folks you don’t run a marathon the first time you decide to have a jog, so why the judgement about the fact I didn’t travel alone? It was still fucking huge for me to navigate the hospital alone – one of the biggest in the area, to a clinic I have been possibly twice before ( as it location changed within the hospital).

I also need to point out any medical appointments set off my anxiety and can lead to me not sleeping properly for several weeks before I go. Due to the horrendous treatment I have suffered at the hands of the medical profession in the past. So I may go to doctor’s appointments at the gp surgery by myself and the same for dental appointments but it doesn’t mean I am happy or confident doing it. I hate it. It has got to the point where I just don’t like, feel / safe or comfortable if I have to leave the house by myself. My home is my safety zone where I control the light, noise, amount of people etc

So for clarity I travelled in our car for an hour with my husband Mr Myasthenia Kid and our trusty sidekick Dembe, who is in training to become my assistance dog and a bit of an emotional crutch as well to be honest. We tried to get parked up but there were no spaces, so hubby had to drop me off in front of the hospital, he set up my mobility scooter, helped me get on and left. Yes folks he left, I had the appointment letter in my hand and off I went on my adventure on a mobility scooter I have also never used by myself before – someone has always been with me. So many hours were spent last night panicking about it breaking down, knocking stuff over and getting lost. This hospital is not very user friendly and it is very easy to miss a turn and get lost.

This hospital is one of the largest in this part of the country ( South West of England) . Its main entrance goes on forever shops, coffee shops, stands for charities etc and hundreds of bloody people. Who’s walking speed resembles an extra on the walking dead ( For the uninitiated a Zombie). I am not massively confident on my mobility scooter owing to the fact on a couple of occasions I have only just managed to avoid being headline news in the locality…..once I nearly went over the sea wall because I was chatting and not looking where I was steering and on another occasion I moved the control in the wrong direction shot off the pavement into the path of an oncoming car. Despite the look of abject horror on my face I got a mouthful of abuse from the driver ( and I can’t blame them for that). So my nerves were a little frayed already and I had been having nightmares about old people going down like ten pins in my wake.

It actually went a lot smoother than I had imagined it would. That wouldn’t have been hard though as at 2am this morning, I was going over every possible scenario in my head. Members of staff asked me if I needed help ( that was probably the look of sheer panic on my face) asked if I needed doors held open, lifts held. In fact being alone on a mobility scooter I got more help than when I was with Mr Myasthenia Kid in a wheelchair. Which strikes me as a bit bizarre as even with him we still needed assistance with doors etc.

I checked myself in at the clinic and tried to find a place where my scooter and I wouldn’t be in anyone’s way. One of my major gripes with hospitals is that despite it being quite obvious that people with disabilities will use them, they do not provide waiting rooms with a space where you can park up a wheelchair or mobility scooter where you are out of the way. It seems a bit fucking ridiculous if you ask me that hospitals seem to not think about accessibility when it comes to their outpatient departments. They ram the waiting room spaces with chairs but when you bring your own it’s a bit of a bloody nightmare to find somewhere to park up and not cause a major obstruction for staff and patients. Anyway rant over. I found somewhere that I thought was out of the way and thankfully it was.

My appointment went well, managed to get myself back on some medication to prevent my migraines as the amitriptyline isn’t doing its job, I have had two migraines in the last two weeks. Plus I really shouldn’t be on amitriptyline with PoTs

I managed not to crash into chairs etc as I reversed out of the room and turned outside. I did however manage to get lost on my way out of the hospital. Probably because I got cocky it was easily remedied with reversing and taking the turn I missed. When I got to the foyer I was just getting ready to find a spot to stop and get my phone out so I could ring Jay and left him know I needed to be collected, when I heard him say to Dembe “There’s mummy look”. Dembe was so well behaved, he came over walking beautifully on his lead and then jumped up and gave me lots of kisses. I can’t tell you how glad I was to see them both. I was no longer on my own and I could make my way back to the safety of the car.

It was also the first time since we had started training that he has walked with Jay and me, when I have been using the mobility scooter. He walked beautifully and I could fully concentrate on driving rather than worrying that I was going to run him over by accident.

Today’s travel and navigating the hospital corridors have left me exhausted. I don’t feel particularly brave but I do know this was a big deal. Maybe when I am not so exhausted I will be able to appreciate how very brave I was today.

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?

Dembe

Those of you who have been following my blog for a while will know that sadly I lost, well we lost our beautiful Weimaraners 7 days apart at the end of last year beginning of this year. I let you know that we had also got ourselves a beautiful yellow Labrador ( he has a bit of fox red in him as well). I haven’t really spoken about him much here, not because he is some state secret but because mainly my blog has always been about the Weimaraners and because our lives have changed so completely with losing them and having Dembe.

 Mollie

 Frankie

Willow

Our lives have always revolved around our dogs and they always will. With the Weimaraners our lives were quite restricted, when left they would destroy our home ( chewing furniture, banisters, carpets basically anything they could get their teeth into) and sing to the neighbours. It meant if they were ever left we would have to pay for a dog sitter or beg friends to come and sit with them. They were fine as long as they had someone with them they just had awful separation anxiety when left alone. We could have taken the easy way out and given them up / rehomed them. If you ever look on websites for dogs you will always find Weimaraners on there 6 months to a year old who are being rehomed because they can’t be left alone without causing damage or noise. It breaks my heart. 

We decided as that as we had wanted them we would have to adjust our lives accordingly. It meant no going out together as one of us would have to stay home, ( they also destroyed the car if left in that with Willow eating the handbrake one day!). They dominated our lives for 15 years but although it may seem like a huge hardship they gave us so much love and so much companionship for me I never saw it as a hardship. We loved them dearly and due to that love we were prepared to put our lives effectively on hold for the time they were with us. Those years went past in the blink of an eye. The hardest part of those 15 years was some people just not understanding that our dogs would always come first and that we would miss events because of not being able to leave them. 

Now I am not slagging of the Weimaraners, a lot of their problems were caused by me and Jay. I fell ill 3 months after Frankie and Willow were born and due to the stress of me being ill and genuinely not being well enough their training was rubbish and so was their socialisation. They also got attacked several times when they were puppies by other dogs, so they became nervous aggressive. Walks became so stressful it was easier to walk them at 5am, which then became 4am which then became 3am. Jay would then be up for a few hours and then would go back to sleep getting up time would depend on whether he was working that day or not.  Evening walks would have to take place in dark on the common like the morning walks so that they wouldn’t bump into any other dogs. It was stressful, we were always worried about dog owners who had no control over their dogs who would let them get up in Frankies personal space despite us telling them he was nervous aggressive.

When Willow passed away in 2017 things got easier, mainly because there were only two dogs to control and the fact that she would whip the others up into a frenzy. We missed her greatly but it would be a lie to say that things didn’t get easier. Frankie no longer reacted to dogs out on the walk, he stayed well clear of them but you no longer had to worry that he would get aggressive due to his fear. Mollie was always really good with all dogs and we never had any problems with her. 

With Dembe it has been a clean slate, training started from the minute he arrived home and has been consistent. We don’t get dictated to by him when he goes out for a walk, where as the Weims would start crying and pacing due to being creatures of habit. For Dembe we have deliberately kept his walks unscheduled, so he doesn’t know and therefore doesn’t start acting up demanding a walk. He fits in with us not us with him. We don’t love him any less or any more than the Weims, we just decided that we wanted some of our life back.

The change in both of us has been immense. Jay used to suffer terribly with fatigue, we put it down to his methotrexate for his psoriasis and the stress of looking after me and the dogs. In reality now we know that it was night after night of broken sleep. Being awake for a few hours in the middle of the night from 3am until 5am then going back to sleep was destroying him. He never wanted to do anything or go anywhere because he was always so exhausted. Who can blame him he was dealing with extreme sleep deprivation. What I haven’t said is that when he was on an early shift ( quite often he would have had a late finish the night before so he wouldn’t have gone to sleep much before 11pm) he would get up at 3am and that would be him up until he went to bed that evening. 

Jay is now up every morning by 7am, 7.30am at the very latest. If he is on a late night we get to do stuff all together before he goes to work at 12pm.  We have a cup of tea and have a chat and then we will take Dembe out. Depending on how I am feeling or where we are going means that sometimes I can join the boys using my mobility scooter. Dembe is limited at the moment as to how much exercise he can have so that we protect his joints . Currently he can have 20 mins a day in just over a weeks time he can go up to 25 minutes as it is 5 minutes for every month of his age. 

Jay and I would be lost without him but we have really struggled to accept over the last 10 weeks that he is actually ours. That probably seems a really weird thing to say but I think because he came into our lives during one of the most traumatic periods we have lived through, although we loved him immediately there was almost this feeling that he didn’t belong to us. I would forget he was in the house with me and he would bark and I would jump out of my skin. His care was never, ever compromised it was just we were overwhelmed with grief and all this love we had for this little ball of fluff. 

He seemed so very little when we first got him home at 8 weeks, despite the fact his weight has increased by at least 10 kg and he has got so much bigger he still seems very dinky to us. After having three huge Weimaraners for over a decade I am guessing anything would seem tiny.  He is a very affectionate dog, he loves cuddles and kissing. He really loves Jamie and they have a little routine that when Jay gets into the car he looks into the back and Dembe smothers him in kisses. For me Dembe is my little shadow, I can’t go anywhere without being followed. He has also started to pick up on when I am unwell and adjusts his behaviour accordingly. We are not at the stage yet where he will happily lie on the bed with me all day but he will snuggle up next to me on the sofa. When I had a migraine Sunday afternoon and went to bed at 6pm he came up with me and settled down with his head over my feet. Just like Frankie used to. He also likes sleeping curled up on the top corner of my pillow. He gives me a little kiss goodnight when The Archers theme tune comes on at the end of the programme and settles for the night.

Without him Jay and I would have fallen apart. We have both really struggled mentally and physically over the last three months. I finally have started feeling more like my old self again but I am very quick to tears. Anything about Rainbow Bridge and I am gone. If anyone posts that their dog or cat etc has passed away I break my heart. The pain is still very raw but I am able to function in the world where as initially I felt so disconnected and as if I was trying to work on autopilot. 

I have neglected a few friendships because I have just been overwhelmed by the grief of it all. I know some people just wont understand at all how you could be so upset by an animals death. Believe me you can. I wish every night the last image in my head wasn’t Frankie passing away or seeing Mollie unable to walk or lift her head due to the catastrophic stroke she suffered. I had to stop watching this weeks episode of the walking dead when the heads on spikes mouths were moving despite them being dead. Frankie’s mouth muscles twitched for the whole time I lay on the floor with him after he passed away. It was too much and sent me straight back into flash backs of losing him. I was quite proud of myself being able to write all this without sobbing but I have fucked that up now.  I hope some day those horrific images stop waking me from sleep and stop being the last images in my head before I fall asleep because I do know happiness despite being so sad.

Without Dembe I wouldn’t be here, it is as simple as that. I could not have carried on under that weight of grief. I am not saying that to be melodramatic but for a few days there I wanted to die myself. My heart hurt and no one except Jay understood what I was going through. I have never seen Jay look as ill as he did during those 6 days that we had no dog in the house. When Dembe came home the colour came back into his face and it forced us to start living again. He is our miracle boy and our saviour. Even when he is being a wee shitebag.

If you would like to find out more about Dembe he has his own blog at http://www.thedembediaries.com 

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.

Am I moaning?

I think I am going through what a lot of people with chronic illness / chronic pain go through where they wonder if they have turned into a bit of a moaner. Obviously a lot of us have pretty reasonable things to moan about but I am started to get paranoid that maybe I have crossed an invisible line from previously what was an acceptable level of moaning to an unacceptable level of moaning, for those whose lives aren’t blighted by chronic illness.

 

I usually say very little about my health on social media, its like my own dirty little secret that most days I am wracked with pain or have ptosis or feeling anxious or whatever the hell is going on that day. When I do post it’s usually because things are much worse than normal. I have posted a lot this summer about my health because things have been the worst they have been for a long time. The heat wave although helping my joint pain no end made my PoTs symptoms absolutely horrific. Every movement kicked off palpitations, my blood pressure was horrendously low in the 80/70 range most days. Leaving me feeling faint and exhausted. I could barely manage to walk some days. Many, many days were spent in bed feeling very sorry for myself. And do you know what? I get very angry  when I feel sorry for myself because I feel weak and vulnerable.

 

Regular readers will also know that my CSF Leak has come back, although it’s not at the level it was in 2016 I have had several days over the last few weeks where I have been unable to leave my bed because the pain is so intense. It makes me want to vomit. I described the pain to someone as feeling like both my eyeballs had been removed and dipped in acid then rammed back in the sockets. Whilst the back of my head feels like I am being beaten to death with a shovel. Now if you were experiencing those levels of pain do you not think, honestly that you may mention it once or twice? Or however many times that you want to. Because believe me when you are dealing with that kind of pain you just don’t care what people think.

 

Along with the pain the CSF leak brings I have also had some additional symptoms like vertigo that only goes away with lying flat. Losing my balance very easily and being unable to bend down / lean forward repeatedly as this is triggering the leak headache. As I say I am lucky it’s not as bad as it was in 2016 but it’s bad enough.

 

In the last few months I have also had my migraines return, I have ended up having to take amitriptyline every night as a migraine preventer. It’s kind of working since taking them at the start of July I have had one migraine. However my migraines have come back as if they are amped up on steroids, I have to lie in a darkened room, vomiting into my bedroom bin because I can’t get up.

 

Bizarrely I have also had my left big toe, nail fall off, out of nowhere. I had an intense amount of pain in my toe. It actually hurt to touch the nail. I lifted up the side of the nail ( I had both sides removed over ten years ago due to repeated ingrowing toenails) and the nail came off in my hand. It hurt but it didn’t hurt anywhere near as badly as it had done just before the nail came off.

 

Have I bored you yet? Because believe me I am bored with it. I feel like I am in a never-ending soap opera where shit keeps happening and I have no control over it. So yes I may have mentioned on social media a few times over the summer how fucking awful I am feeling and to be fair I haven’t even touched on about 50% of the health stuff that’s been going on of late. This is just the stuff I can think of off the top of my head.

 

Admitting you are sick on social media is a dangerous game, post happy cheerful stuff and you are judged to be not as sick as you make out. Post stuff about how fucking awful you feel and you’re moaning. You can’t win. I don’t want my life to revolve around my health conditions but there will be periods of time when it does because all I can do is just keep my head above water.  To feel that I can’t express what is going on in my life, when I can go weeks where the only person I see or talk to in the flesh is my husband, just seems cruel. It’s not that I want someone to talk to – and thank you to all those who have offered me a safe place to vent. It’s just sometimes even I don’t believe what is going on health wise. I don’t think I have ever been completely honest with anyone because there is always more than one thing going on with me. I always just give those closest to me the headline news not the full story.

 

Any way that’s me, I am bored with this subject already and if I am bored with it I have probably sent the rest of you to sleep also. Mr Myasthenia Kid has been on holiday the last two weeks ( well just over ). It’s the longest holiday he has taken in years. We’ve really enjoyed the time we have spent together. We’ve managed to work on a few projects together, which I first touched on in my blog post upcycling.

We had so much paint left that we decided to upcycle our lounge coffee table  taking it from this – those dots on it are from dog drool

To this

 

Jay did the lions share of work because I am just not physically able to. I did a small amount of painting, basically just catching the bits that he missed. We have painted the stripped pine with hard wax oil which means the wood is now water-resistant and has a lovely finish. It took several days to dry and for a while we were concerned that the top of the table felt very rough. However as the hard wax oil has dried its left a silky smooth surface.

 

Jamie’s work also got the thumbs up from John Scott and Jo Carter on the Sewing Quarter. I don’t think I have ever seen Jay so proud as when they both said how lovely the table looked. I am very proud of him as it was no mean feat sanding the table top down.

 

 

 

Not happy with doing  just the bedside cabinets, the lounge coffee table on bank holiday Monday 27th August 2018 he also painted our kitchen chairs. They look fabulous and make such a difference. And we still have paint left from the 750ml of Scotch Mist Frenchic Furniture paint.

 

I also got a shout out on the Sewing Quarter Saturday 25th August – cheers John xx