17th October

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.

Advertisements

World Mental Health Day

World Mental Health day was held on Wednesday 10th October ( today as of writing this). It’s quite ironic that I am in a spiral of anxiety again. I am trying very hard to distract myself but it’s very difficult when you spend your days alone for the majority of the time. 

 
 
When my anxiety gets very bad I tend to fixate on something. It can be really obscure, last time it was Meghan Markle now the Duchess of Sussex – don’t ask me why it was probably as it was coming up to the Royal Wedding. I don’t fixate of anything in particular it was just she was constantly on my mind. I know how very fucking weird that sounds. I don’t have any control what I fixate on. I was worrying about how horrid her family were being to her and hoping that the wedding would go smoothly. See I told you I can fixate on the most bizarre things. All I can do is wait for the anxiety to pass and for me to no longer fixate on the issue.
 
Currently I am fixated on Frankie (dog), he had his 12th Birthday on Sunday and obviously that day was happy and sad because it also would have been Willow’s 12th Birthday. As a double whammy it was my late Grandmothers birthday the day before, she would have been 90 years old. On top of that October is an extremely hard month for me as it’s the month that hold the anniversary of our first dogs passing – October 17th 2006. The date is etched on my memory, it will never leave me, just as December 15th 2017 (Willow), January 6th 2018 ( Gran )  January 24th 2017 (Andrew), January 26th 2018 (Pam). The older I get the more dates I remember. Its something I can’t help. 
 
Frankie is the centre of my fixation at the moment as he is a big dog who is 12 years old. He has a grade 2 heart murmur, arthritis, mobility issues and possibly a tumour growing on his back leg. He can’t have any operations due to the fact he won’t survive the anesthetic due to the heart murmur. I know that some time very soon ( I sincerely hope it isn’t soon but I am a realist) we will have to make a decision that will break my heart all over again but will be in my boys best interest. What makes it hard is I am destroying the time I have with him now by fixating on this. Like I said it’s totally out of my control. Until I get on a more even keel these intrusive thoughts will just continue. I have tried telling them to stop, I have used distraction. I have used everything in my arsenal and now when things are exceptionally bad I am having to use diazepam. 
 
When you have anxiety or any mental health issue there is no banishing those horrid thoughts from your mind as someone so helpfully suggested on social media. There is no just getting over it. You just have to ride out the storm until the anxiety cycle or whatever the issue is, is either alleviated through some sort of treatment or it burns itself out.
 
So please be kind with your words, don’t rush to judgement. You really have no clue what another person is going through. Just be kind, sprinkle that shit everywhere, in every way that you can.
 
Peace Out xxxx

Mum

I look back at the time when I used to write two blog posts a week and for the life of me can’t understand how I did it. I know at the time it would take all week to write those two pieces. I hadn’t discovered sewing then and was desperate for something to fill up the long hours of being alone whilst Mr Myasthenia Kid was at work. These days I can struggle to come up with one post a week as I don’t want to be forever moaning about my health but due to the fact I don’t go out socialising and can spend many days where the only person I see is Jay. It can be incredibly hard to find that spark that inspires the next blog post.

 
At the moment I am struggling to sleep or even when I do sleep that it is good quality sleep. I am constantly feeling like I am semi conscious. In the mornings it is taking a few hours for me to become properly awake. I hate it when I am like this as it just feels I have wasted a few hours before I can do anything at all purely because in my semi conscious state I am so clumsy and not fully alert to attempt to do anything at all risks injury. When I am like this I quite often go off into a world of my own, minutes can pass before I realise I have been sat staring into space thinking of nothing in particular, I have just zoned out. Every part of me feels like it is on a go slow whilst I wait for my morning medications to take effect. It also means my pain levels are higher than normal.
 
 
Some of you who follow me on social media will know that life has been extremely stressful of late. I havent gone into massive details on my blog but now I feel is the time to let you know what’s been going on. Back in July my mum went to her doctor’s surgery as she had been experiencing some pain. During the course of an examination the gp discovered a mass on my mums ovary, not a little one a huge mass. Mum was referred to hospital pretty much straight away under the two-week rule ( for those of you unaware of the two-week rule, is that if cancer is suspected you will have tests and see a specialist within 2 weeks. I have been referred twice in the past under the two-week rule when I have discovered lumps in my breasts. Thankfully both times it has been fine.)
 
Before the operation my mum was in a lot of pain, the mass was increasing in size and was now becoming visible externally. Every time mum was examined she ended up in agony. It was a very worrying time for all of us. 
 
On August 13th Mum had a massive surgery, she had decided that although the surgeon had told her that they weren’t 100% sure if the mass was cancerous there was an area that was causing them concern. They would possibly be able to tell her after the surgery if it was cancerous or they may have to wait until the mass had been examined by the pathology lab, that she would have everything that they could remove, removed to give her the best chance. So rather than it being a hysterectomy, she also had her ovaries removed, appendix removed, lymph nodes removed, cervix removed and all abdominal fat removed. This meant that should it be cancer there was nowhere it could hide and grow in. 
 
There were complications during surgery which meant another surgeon had to be called in to assist as mum had bowel adhesions – despite never having an open surgery in the past or even a laparoscopic surgery. She was one of the unlucky 10% of the population that develop adhesions without surgery. It possibly explains why I have developed such bad adhesions, if mum can have them without surgery and I have had around 5 abdominal surgeries.  For those of you who don’t know you can get adhesions anywhere and they are bands of thick fibrous tissue, scar tissue that sticks organs / intestines together. They had to be removed during mum’s surgery so that the cyst / mass could be removed.
 
A standard hysterectomy takes 12 weeks to recover from, due to the extensive nature of mum’s surgery she is looking at a 12 month recovery time. It’s extremely frustrating as a few people have assumed that now that she has had the operation she should be back to full health. Peoples ignorance is really astounding. Mum was cut from just under her sternum to the middle of her pubic bone due to the size of the mass and the need to remove everything possible. 
 
It wasn’t until the middle of September that we found out that Mum had cancer ( now technically the cancer has been removed but medically she will not be classed as cancer free until she hits the 5 year mark.) The cancer she had was very small but also very rare stage 1a grade 2 Endometrioid Ovarian Cancer. The mass removed was a cyst that had wrapped itself around the ovary and the cancer. It was 25cm in length so nearly the size of a rugby ball. Thankfully the cancer was contained and hadn’t spread but mum will be monitored very closely for the next 5 years. Due to the nature of the cancer she can’t have HRT to help with the loss of her ovaries, hormones could help it come back.
 
Obviously for us as a family this rapid turn of events was very shocking. My body gave out on me due to the stress and I ended up in bed quite a bit over the summer. Well that combined with the ridiculous heat. My mum was the very last person who I would have guessed would get cancer. She has been vegetarian since 1973 and went Vegan two years ago. She is a perfect weight for her frame and despite having Coeliacs Atxia was reasonably active. Out of everyone I know she wouldn’t be the one I’d have said was likely to suffer with cancer. I was more likely – overweight, ex smoker not a brilliant diet. My mum really struggled with getting her head around being sick. 
 
She has told me herself ( and I checked before sharing here) that she felt embarrassed at the fact she had cancer, mortified at the fact she was ill. She didn’t want to be seen as weak and vulnerable. She had been extolling the virtues of a vegan diet to anyone who would listen for the last two years, a diet that will reduce your risk of getting cancer and here she was two years in with cancer. It was made very clear to me that this diagnosis was not to be discussed, so other than a few of my closest friends no one knew what was going on. If anyone asked I would just say I was stressed due to life stuff. 
 
It’s only in the last week that she has posted on her own Facebook page that she has had a cancerous mass removed. So after discussing it with her this morning to check it was ok I can finally tell you all what has been going on.
 
It’s why I have been having trouble sleeping, pain issues, more migraines, vertigo etc. It made me feel utterly useless. I wanted to be able to support my mum but I feel like my body betrayed me. However it’s been really lovely that I have spent quite a bit of time with her one on one. As many of you know I live an hour away from my parents and a lot of the time I am not well enough to travel. My parents have a caravan around 10 minutes drive away from where I live, so whilst my dad walks his dog on the beach mum comes to my house and we have a catch up for about 90 minutes. I have thoroughly enjoyed spending the time with her.
 
And some of you may have put two and two together and worked out why I made my mum the very special lap quilt for her birthday this year.
 
 
 
 
 
She is doing really well. Every time I see her she looks so much better than she did the last time. She is doing really well. Fingers crossed that we sail through the next 5 years with no issues.

It would be you

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Human Barometer

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

 

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

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

 

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

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

 

 

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

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

 

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

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

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

 

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

 

I also made a number of Travis bags.

Solitary confinement

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.

 

My first gifted quilt

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.

update:

It was gifted to her on 1st September and she was thrilled to bits with it.