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 

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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

 

 

Down the rabbit hole

What I have been holding my breath waiting for since the start of the year and all the bereavements we went through has finally happened. I knew at some point my health would be impacted and over the last 7 days it’s happened.

 

I’ve spent a few days in bed this week, purely because the chest pain on moving and the level of exhaustion was becoming unbearable. I really hate it when my health takes a nosedive as it can be months before I get back to where I was before. The same thing happened last year when we went through two bereavements in the space of 6 months. It took me from the May until the October to get anywhere near where I had been before.

 

I hate the feeling of helplessness and vulnerability this creates within me. I lose all motivation to do anything and just want to hide away from the world in the hope it will leave me alone. But it wont and I have to be a grown up and deal with the things that make me feel uncomfortable.

 

I am fed up with the professionals in my life telling me that my body’s  and minds response to this is normal, personally I’d prefer that they waved a magic wand and made it all go away. However I know it’s not going to happen so I just need to put my big girls pants on and get through this.

 

I am trying desperately hard not to fall down the rabbit hole and get seriously depressed. I won’t lie I am dealing with depression and anxiety at the moment. I have lost my sewjo, I have just been too exhausted and when I have tried to sew I’ve ended up with horrendous double vision. Sewing to me since October has been like breathing so to not be able to currently do it is frustrating. Hopefully it ( my sewjo ) will return soon and I will physically be able to do it.

Even Weirder

If last week was a weird week I haven’t got a clue what this one should be called! I had more vertigo, a migraine from hell, so bad that Mr Myasthenia Kid had to take the day off from work to look after me – more about that later and I can’t share any of my sewing makes over the last few days as they are all birthday presents for friends between 23rd June and the end of August. A little frustrating when I am so pleased with all of them, The good news is that my sewing job list on my phone for the months of May and June have reduced dramatically!

 

As I wrote in my last blog post I attended a course last Wednesday regarding how to use my overlocker. I was so excited about the course and I hate to say it but it was a real let down. It was everything a teaching session shouldn’t be. In a previous lifetime (1996-2005) I held the position of Training Manager at my place of employment. I was responsible for all the training that took place for the 350 plus staff we employed at the time. Not only that I was also sent to various other locations throughout the south-west to teach other Training Managers (they were also sent to work with me to get an understanding of their role) and to teach staff for new store openings. I loved the job and I am not afraid to say that I was bloody good at it. It broke my heart when head office in its wisdom decided to get rid of the role. Training quality immediately plummeted – in my workplace. I have been sorely tempted over the last few years to do  a  freedom of information request to see how many court cases they have had since removing the Training Manager role.

 

So with nearly ten years of teaching under my belt, I know that people have varied learning styles. Some learn by watching something and then having a go, some people learn by reading a manual and some people learn by a mixture of those two. Unfortunately the course seemed to be mainly the us the students sat at our machine with the trainer talking at us. So bored was I that I actually got my phone out and started to look at Facebook – discreetly. I didn’t want to be rude but I had to do something to keep myself awake as the stairs getting up to the classroom had nearly killed me. Oxygen was almost required – this was not suitable for the disabled sewist.

 

The course had been billed as getting to know your machine – I’d had mine since 13th April so rather than being terrified I had dived straight in. It became clear talking to the other 7 pupils ( excluding my mum, yes 9 people to one tutor how on earth could all of us see anything when she demonstrated at a machine?) that they had never even opened the boxes that their overlockers had come in, that possibly mum and I were too advanced for this course. I obviously wound the tutor up when after she dramatically cut all 4 threads on my overlocker and asked me to re-thread it and I had it done in less than 5 minutes. She told me off for using my machine when I was checking that it was chaining (working properly). She didn’t realise that I had threaded it and actually knew a little about what I was doing. The course went downhill from there.

 

Three people’s machines broke during the day and not once did the tutor offer any support, instead there were sarcastic comments dressed up as imparting information that certain brands of machines were basically crap and  It concerned me that someone who claimed to know so much about brands was unaware that Elna and Janome are the same company. One lady went downstairs and bought a new machine but still this woman ploughed on and didn’t recap with the lady what she had missed. The same happened when my mum’s machine broke.

 

By the end of the day I could barely maintain a civil composure, I was threading my mum’s machine to ensure that she had a working machine when we left the course – thankfully her machine was repaired there and then by the shop owners – I can’t fault them at all. I love their shop and they have always been lovely which is why I am not naming the location of the class as I wouldn’t want to damage their reputation, when this was someone who obviously comes in and works for the. The teacher was demanding yet again mum and I stand in front of a machine that we wouldn’t have a clear view of – when both of us have mobility issues which were obvious due to the mobility aids we were using. I practically hissed that I was beyond tired as was my mother and having a working machine before leaving the shop was slightly more important than looking at the backs of people’s heads. I then let her look at the back of mine as I got on with threading mum’s machine – something the tutor should have done when she was told mum was having issues seeing properly due to the light coming in through the window.

 

All I can say is thank fuck I didn’t pay full price for that class. I still feel ripped off knowing I paid £27 for it. I will be honest yes I learned some bits and pieces but not £27 worth.

 

Thursday was a complete right off as at 2am I woke up with a migraine, it was hideous. I couldn’t stop being sick and by the time Jamie found me lying in the dark at 9am I could barely speak. By 2pm I was starting to come around but I was just completely drained. However my back would not put up with me lying in bed any longer so I forced myself downstairs.

 

I was wiped out by the migraine for a good couple of days but I did get some sewing done. I managed to make a start on my floating triangle quilt, so the week wasn’t a complete right off. I have started taking pizotifen again in the hope that it prevents more migraines in the future or if not it at least reduces the intensity. I can’t cope with that again nothing stops the pain or the sickness.

 

My quilt pieces, this is as far as I have got as the rest of my time has been taken up making birthday presents,

 

 

Now all that is left to do is to join them all together in the right order!

Migraine

I am in the throes of yet another migraine, I knew it was coming as my Todd Syndrome / Alice in Wonderland syndrome stuff has been going nuts. Walls moving, feeling like I am falling when stood up and feeling like I am sinking into the floor. The symptoms ramp up and become more and more bizarre the closer I get to the migraine. Yesterday they were particularly bad. So it was no surprise to me when I woke up in the midst of another attack. Why they are more frequent at the moment I don’t know but they are very sinus based which maybe because the cold I was suffering with has now turned to hayfever. It really has been a box of delights the last few months my health.

If you would like to read more about Todds Syndrome / Alice in Wonderland Syndrome please click here

 

So I will just share with you some photos of my latest makes, another piggy and three tops. I am part way through making myself a kimono, it needs hemmed and the sleeves taken up but I am happy with it. As its only part completed there is no photo.

I was really proud of this one as it’s a much better looking pig and finish than the first two. I was immensely proud when the lady who designed the pigs for Simply Sewing Magazine and Sewing Quarter commented on my post on Instagram.

 

I also made myself three tops over the last week, following the same pattern that I devised myself. I am really pleased as I made a major mistake when I ordered all this material. I believed I was ordering by the metre when in fact it was by the half metre. I thought I had ordered 2 metres of each fabric only to find out on arrival it was just a metre of each. By moving the fabric around and being creative I managed to get a top out of each metre, I am not small so this was a big achievement.

 

I managed to take this photo of Frankie yesterday so thought I would throw it in for good luck.

Winter Lurgy

I have come down with a winter bug and I am feeling pretty rank. Really hot, itchy sore throat, blocked nose and aching all over. So I am not up to writing a blog post this week, so you have my apologies. I should have written it earlier but was enjoying having a couple of reasonable days and left it until the last minute – Wednesday.

 

So instead of a post I will share a couple of photos with you that I have taken over the last  week.

All three dogs waiting for Jay to share his food with them.

Mollie sleeping with her new ball to stop the kids stealing it.

 

Our Dresser has been changed over for Christmas, to all our Xmas Emma Bridgewater Pottery.

We bought some tiny lights to put on the dresser which looks fab in the dark evenings.

I did manage to spend some time making som Star Christmas Tree Toppers. I have also managed to sell one which made me feel immensely proud.