Around two days after I wrote my last post “Washout” I ended up contacting my doctor and was prescribed antibiotics. I had been running a temperature for around a week and I just wasn’t feeling any better.
Well the last week has been a bit of a washout, on the day my last post was published I started to come down with a nasty virus. My throat felt like I had swallowed a packet of razor blades, I started to ache all over and my temperature started shooting up. Within the space of a few hours I had gone from feeling ok to wanting to crawl into bed and cry.
Thursday was also hard because Frankie and Mollie came home to their resting place. It was a really emotional day. Jay and I wanted them back home with us but it also meant it was final and we would have to accept that they were gone. They have a beautiful spot on our bookcase in their Emma Bridgewater pet bowls with their names on.
I can’t look at the shelf at the moment I find it too upsetting. I miss them both so much but particularly my Frankie. He would have loved Dembe as he was always crazy about puppies. Whenever Jay took him to the vets and there was a puppy there Frankie would cry until he was allowed to go up and see the puppy.
I remember him when we had the 2nd litter of Weimaraners and he had them hanging off him, all different places and some quite painful and he never batted an eyelid. He was so very gentle when it came to puppies. He didn’t like other fully grown dogs much ( other than Mollie his mum and his sister Willow, who we lost in 2017) but puppies oh how he adored puppies. I know he would have adored Dembe.
Obviously due to the emotional battering we have taken over the last few weeks both our immune systems have been compromised. I rarely pick up any bugs that are going around even if Jay comes down with them 99 times out of 100 I will avoid them. So its unlike me to come down with something first. However over the last few weeks we have been out and about much more than we have been previously. I have mixed with many more people than I normally would. So I have probably been a lot more exposed to other people’s germs than I would have been before.
I haven’t worn proper clothes since last Thursday I have just had to lounge around in my pj’s because I just don’t have the energy to get dressed. Some of my friends have also come down with this virus and have ended up quite poorly with both chest and sinus infections. Hubby has said they are dropping like flies at work and he is now starting to come down with a cold.
Dembe still brings us much joy and delight. He is such a happy pup, he just wants to please you the whole time. He has mastered sit and paw. We are working on his recall at the moment as he will be able to go out for his first walk on Thursday. Initially whilst we are still working on his recall, Jay will be walking him around the local streets teaching him to walk to heel and to get his bearings. He is desperate to get into the outside world. He loves sitting on the lounge window ledge and looking outside.
I don’t know what we would have done without Dembe, this Friday we will have had him 3 weeks and he will be 11 weeks old. He has grown loads but is still tiny compared to our other dogs. I don’t even remember our other dogs as puppies. Probably because they grow up so fast. He changes every day and each day just brings us more joy.
The really weird thing is Dembe on Friday seemed to know that I was feeling really rotten. Whilst I was lying on the sofa he wanted to sleep at the end of the sofa just like Nurse Frankie did whenever I was really poorly. Normally Dembe sleep’s in his bed in the kitchen, so it is quite unusual for him to spend long periods of time on the sofa with me. He was so calm all day Friday, like he knew he had to tone things down as mum wasn’t feeling well.
He also loves empty toilet roll tubes just like his Uncle Frankie did. He has a box full of toys but he goes crazy for an empty toilet roll tube. It is so sweet that he has some of Frankie’s ways about him, he also loves a ball like Mollie did and loves cuddles like Willow. We don’t compare him to our other dogs as that would be like comparing apples and oranges. It is just nice to talk about the others and him in the same sentence.
Well as I have heard from friends all over the country who have succumbed to this virus / flu-like bug I hope you all manage to avoid it. It is really nasty, I spent most of last night coughing as my throat kept drying out. Until next week…
My last post was published on the 10th of January when I felt like my whole world had caved in. The last few weeks have been very hard, I miss Frankie and Mollie so much that my heart aches. There has not been a day that has gone by where I haven’t wept with the pain of losing them as suddenly as we did. To lose two dogs in 7 days is something I wouldn’t wish on my worst enemy. I wouldn’t have got through it without hubby by my side. In fact I would have probably given up completely had he not been here.
For the last ten years I have written about how much I hate October and how this month always fills me with sadness. This year is no different. In some ways it is worse.
This morning (17th Oct) I woke up sobbing, as today is the 12th anniversary of our beloved first dog Travis’ passing. He has been dead longer than he was alive, just under three years. The pain today is as raw as it was on the day we said goodbye. Why it is so bad today I don’t know. Perhaps with everything that has gone on in the last 12 months ( losing Willow, Pam, Gran, mum having cancer – now in remission) it’s all the stress just being released. I often wonder how it is possible that I can shed so many tears for a dog that was in our lives so briefly but he wasn’t a dog to us. He was our boy and the pain of saying goodbye is something I will never get over.
Losing Willow on December 15th was hard but she had lived for 11 years. In that time she had been pampered and showered with affection. She had fought many battles herself having cancer, a pyometra both of which could have killed her. I had a sneaking suspicion in the months before her passing that the cancer had returned but it was internal. I know people thought I was crazy when I voiced my concerns, like I was wishing her life away but I know my dogs and I know when things aren’t right. I have cried many tears over Willow but it is a different pain I feel with her passing. I miss her, I remember her fondly. The pain I feel with Travis is like a knife to the heart. The level of pain is not something that has ever gone away. I can talk about Willow without breaking down although some days it makes me feel terribly sad. Talking about Travis about 50% of the time will reduce me to tears no matter how strong I am feeling. It doesn’t mean I loved Willow any less, it just means Travis’ life was cut short and I mourn the time I should have had with him. However had he lived I would never have experienced life with Frankie, his nephew.
Poor Frankie and Mollie ( Trav’s sister) have been desperately trying to lick my face clean of tears all morning. I am trying to pull myself together because I know the sight of me breaking my heart is distressing them. I hate upsetting them. They are my last links to Travis, Mollie is his sister born a year later from the same parents and Frankie, Mollie’s son is his nephew. I never realised how much Frankie looks like Travis until you compare photos side by side. That’s probably why I dote on him so much. After Travis passed away I said I would never have another boy dog in the house and then after Frankie had been with his new owners a week he came back to us as the children were allergic to him. His owners broke their hearts when they returned him. I have never seen a man so broken by a dog ( other than Jay when Trav passed away and my dad when his beloved Esme passed away). I shed a tear with them. At that point I was resolute that Frankie would be sold. Within a few days I knew I could never let him go.
And now Frankie is 12 and not in the best of health, Mollie is 14 and still bouncing around like a puppy but deaf as a post. A few days ago on her walk she was playing with another Weimaraner half her age and giving as good as she gets. Yes I will be devastated when pass away but I know that they lived full lives, surrounded by people who love them. Travis’ life was cut tragically short and I think that’s why I find it so hard to deal with.
I hate October particularly 17th and I probably always will.
I’m used to my own company, I am in fact quite a solitary character. I don’t need to be surrounded by other people, as I can entertain myself. However sometimes the loneliness of chronic illness really gets to me. I am having a wobble.
Mr Myasthenia Kid had two weeks off work (as annual holiday) in August, it’s the longest he’s taken as holiday in years. Normally he takes a week here and there throughout the year. Always holding some back in reserve in case he needs to take time off to look after me or take me to medical appointments. Usually by the end of his weeks holiday I am happy to send him back to work, as I have my own routine and ways I like to get stuff done. This time however I am finding hard to adjust to not having him home with me. We had a lovely two weeks together, laughing, talking and generally just being together and now the house just seems so empty and quiet. It’s been quite hard to g back to it just being me for long stretches at a time.
It is really hard to explain how empty the house seems, it’s not like he takes up lots of room or that he makes loads of noise. It’s just I got very used to his presence and having someone to talk to. When you are chronically sick and virtually housebound your world gets very small. You only see the people who can be bothered to make the time to see you. Being below retirement age all of my friends are working and have families of their own, so I am very grateful for the time I do get to spend with them . With the pace of life these days, it’s very easy to be forgotten about, out of sight out of mind. I found that back in 2008 when I left work, that all these people who I had known for 12 years who I believed were my friends, just disappeared. They think a quick comment on your Facebook page is a get out of jail free card, it doesn’t replace seeing someone in the flesh and having a conversation.
Most of my friendships are now online and I have made some truly wonderful friends. Particularly on Instagram amongst the crafting / sewing / creative community. I am lucky to have got sick in an age where to talk to someone I just have to open up my computer but it doesn’t replace the physical presence of another human being. I am grateful for the online friends I have but I would imagine they would agree that proper physical contact with other human beings trumps any other contact with the outside world.
I have always been quite a solitary character, my own company isn’t something that has ever daunted me. In fact there are days where I cherish the time I spend alone. I like being able to step back from the outside world but I also like to spend time in it or as close as I can. I like a balance of both but due to my health being so utterly rotten this year, I have barely seen anyone since the end of June. I have literally gone weeks and the only person I have spoken to is Jamie. Can any of you who aren’t chronically sick imagine what that is like, that the only contact you have with the outside world is with one person? It’s no ones fault, this isn’t a dig at any of my friends as it has been me doing the cancelling due to not being well enough. Is it any wonder now that after having two weeks of company I am finding going back to being alone so very difficult? I am grateful that we have the dogs but their conversational skills are very limited.
It’s hard to explain but my heart hurts with the loneliness and the missing Jay. I know he’s only 7 minutes up the road but the house is so quiet it is deafening.
Every year around Christmas time there is always a campaign about loneliness and the elderly. Every year I want to scream at the TV it’s not just the elderly who are lonely in this country. There are hundreds of thousands if not millions of people whose lives are blighted by illness who see no one for weeks on end other than their caregivers or partners. It is assumed that if you are aged between 18-67 that you are in work but there are many of us who can’t work, who are housebound who are crying out for some company yet we are the forgotten ones. I don’t know if it is because people don’t understand chronic illness and can’t get their heads around the fact that there are working age people, who through no fault of their own do not have the social outlet of work and are just forgotten. It’s like we don’t exist.
I am extremely lucky I have friends who do come and visit me. I really appreciate those visits and I hate it when I have to cancel due to my health deciding to have a hissy fit. It takes a lot for me to cancel because I don’t know when they will be able to visit again. There are lots of people in my position who never see anyone. I know I am lucky, I am just sad this week as I am finding it so hard to adjust to Jamie being back at work.
I know given a few more days I will have got myself back into a routine and I will be used to being on my own again. I thank my lucky stars for my cyber friends who are so supportive and caring. Even though I am shit at messaging people because I am always in my own little bubble. I have an issue where I think of someone, say to myself “oh I must message them” and two weeks later I realise I haven’t. I’m currently struggling with what day of the week it is. Not because there has been a bank holiday it’s purely that I have no clue. To give you an example of how bad it is at the moment, I had no clue today was Thursday and was quite surprised when I started to get notifications on my blogs Facebook page. It was only when I looked I realised that my blog post for this week had been published. I tend to write them in advance and schedule them in to be published automatically. This morning I had no idea that it was Thursday. I do however know who the prime minister is and what year I was born! Just in case anyone is concerned about my mental status. It’s just the days are currently blurring into one.
I also know that the way I am feeling now is probably a reaction to all the stress I have been under lately. My mum has had some pretty major surgery that was needed out of the blue. Adrenaline has carried me through for weeks. Now things are starting to calm down, I have the time to spend analysing my feelings because during that time period it was just getting through that day that mattered. It was a frightening / stressful time. In a year of horribly stressful and sad events. I know I just need to get back into a routine and allow myself the period of adjustment instead of being so hard on myself that I am struggling to adapt.
This probably seems quite a depressing read, I’m sorry. I have just really been surprised at the depth of feeling that Jays return to work has caused me. I don’t think in the nearly 22 years we have been together that I have ever missed him so much. Silly really as every night he is home, every morning he is here. Just at the moment being in the house alone seems a little like solitary confinement.
P.s Its over a week later and I am back into my old routine. I am enjoying the time I have to myself and have been really productive on the sewing front. I have also had a visit from some friends which was really nice. Obviously I still miss Jay during the day but it’s not like the deep ache in my heart I had before. I am much happier now that I have re-adjusted to the time spent alone.
Many of you who follow me on various social media platforms will know that my mum has been quite poorly. It’s actually a massive understatement for what she has been through. She’s had a major operation that will take months to recover from. The stress of being so far away from my mum and too sick to travel impacted my health a lot over the summer. So as soon as I could take a breath and think straight I decided I was going to make her a very special gift for her birthday in September.
I was very lucky that a friend on Instagram gifted me a pattern for a quilt, which I had seen her make and loved. It was 4 pussy cats, spread over 4 separate panels, making it a lap quilt. The cats were made by using applique and then sewing over the raw edges. Initially when I decided to make the quilt I was going to use fabric from my stash but whilst I was mulling over the quilt in my mind I decided I wanted to buy some material for the cats. I knew I wanted muted colours rather than bright colours. I had also had the last of one of my subscription boxes, I was unimpressed with the project contained within so I decided I would use the floral fabric charm pack ( 5 inch squares ) in conjunction with the polka dot fabric I purchased. The white background fabric was bought earlier on in the year during the sales. I had no plans for it and decided this would be superb for what I wanted to do. The pattern was discreet enough that it wouldn’t fight with the fabric I wanted to use for the cats which I wanted to be centre stage.
I’ve not done much applique before so I was a bit stressed about it. To be honest everything was stressing me out when I started this quilt. My brain was just fixating on anything it could to worry about. I made the first two cats and immediately fell in love with them.
Both cats had been fiddly to do and although I loved them both, I decided to do what I always do which is make it up as I go along. When I had last seen my mum she had been in awe of the free motion embroidery I had done on a cushion.
I decided instead of having 4 cats on the lap quilt, I would have two cats and two mice, as I knew how much my mum had loved the mouse on the cushion. This also meant that the lap quilt would be completely unique with it being a mash-up of two different designs.
The above photo shows the 4 panels that have the applique designs on them. These were created using bondaweb, which is a fusible webbing. It’s very fine material that is a glue. On one side you have paper and on the other side is a rough surface which has glue on it. To begin you trace out your design onto the paper side of the bondaweb. Then using a dry iron you stick your traced shapes to the wrong side of your fabric. You then cut your fabric shapes out, then remove the paper ( I use a pin to score it as it makes it easier to remove). You then position the shapes how you want them to appear on your background fabric. Using a damp cloth and a steam iron you apply heat to the fabric to bond it to the background fabric. This is raw edge applique, as you haven’t turned the edges over, so the raw edges are exposed. To prevent fraying you then sew over the edges.
For the mice I used a different technique, which is called free motion embroidery. This is where you drop the feed dogs ( these are the things that pull the material under the presser foot as you sew), I also have a special bobbin case for my Janome Atelier 5 ( blue dot bobbin case) which has a lower tension on it. It makes the world of difference when doing free motion quilting or embroidery. I also attach the darning / embroidery foot which is a closed toe. I haven’t done much free motion quilting, I really need to make up some quilt sandwiches and just have a play but I’ve done a couple of pieces of free motion embroidery. The free motion embroidery gives the applique an outline and it also makes it look like you have drawn the edges on. I love the way it looks and the fact that it doesn’t have to be brilliantly accurate as its supposed to look a bit messy!
After I had completed the 4 panels, I made my patchwork backing for the quilt. I wanted the quilt to be as beautiful on the back as it was on the front and in effect be reversible. I used my charm squares for this and added in some squares of the background fabric so it tied it to the front of the quilt. Using precut fabrics speeds things up, as you can literally just sit and sew. Things come together very quickly. I was extremely lucky with the finished size of the back panel as it was a complete guess. As at the time of putting this together I hadn’t decided how big my borders were going to be that would join the 4 panels together.
I decided to use the backing fabric from the panels as part of the sashing joining the panels together. I also used some of the fabric that I had made the cats and mice out of to tie all the fabrics together. I settled on 1 ½ inch strips of fabric, sewn together with a ¼ inch seam allowance. Thankfully earlier on this year I bought a creative grids stripology ruler, which means cutting strips is an absolute doddle. Cutting that would normally have taken me hours and lots of ruined fabric – because I can’t cut straight or measure accurately for toffee, now takes a matter of minutes. I can’t tell you how much I love these rulers, they’ve made my life so much easier! I used a 3.5 strip to make the outside border.
I then freaked out for a few days over how I was going to quilt this. I couldn’t decide if I was going to leave the applique panels unquilted and only quilt the borders. Or if I was going to quilt the applique panels how would I do it without distracting from the applique. I won’t lie it gave me a sleepless night or two. This was an important present, that had significant meaning for me. It was important that I got this right because once I started there would be no going back. Thanks to Instagram and all the quilters I follow my deliberations over the applique patterns were brought to an end when I saw how someone else had quilted their work with just straight lines about an inch apart but not going through the applique. It would be tricky as each time I started a new section would mean bringing the bobbin thread up, something I hadn’t had to do for ages as my new machine means I don’t have to do this. By bringing the bobbin thread up it meant I would avoid a nesting of threads on the back of the quilt, when a locking stitch was used. Although it’s not perfect I used a few small stitches forward and back to secure my threads. I am not advanced enough at the moment for burying threads and due to when my mums birthday was I didn’t have lots of time to master a completely new technique.
Quilting took a few hours and a lot of back, arm and shoulder pain from terribly bad posture.
To finish off the quilt the raw edges of the material needed to be bound, if you didn’t do this the material would fray and the wadding / batting would be lost from the quilt. I made the binding using a fat quarter from the polka dot material I bought. I used my stripology ruler and cut 2.5 inch strips and then joined them together.
The raw edges of the binding and the raw edges of the quilt are lined up and then I used the sewing machine to sew the binding onto the front of the quilt. I had an absolute nightmare with the binding. After sewing it on I had to unpick it as I had sewn too far over and not left myself enough binding to pull over to the reverse of the quilt. It took me over an hour to unpick. I was also having a disastrous time with mitred corners. So I have done the best I can. Once I was “happy” with how the binding was sewn onto the front I then settled down for a few hours of slow sewing whilst I ladder stitched the binding onto the back.
This process took ages as the polka dot material was quite thick. I have ended up with blister’s on my thumb, forefinger and middle finger. There is also a bit of my DNA in the quilt as I lost count how many times I stabbed myself! Finally the quilt was finished.
The very last job left to do was to sew the label onto the quilt. This was a personal message to my mum, so I won’t be sharing. However it also covers who it was quilted by, on what date and what the design is called. I have named it Cat & Mouse.
It’s quite exhilarating finishing a quilt but it can also leave you feeling a little flat. You are overjoyed at what you have accomplished but for me I have lost that drive of what I have to achieve for the day. I really hope my mum likes it.
It was gifted to her on 1st September and she was thrilled to bits with it.
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
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