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.

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.

 

 

Fabric Shopping

Well I am still suffering from this cold, I am into the second week of it now and I am thoroughly sick and tired of being bunged up, sneezing and then rivers of snot! Oh yes I am such a lady!

 

Yesterday I had a dentist appointment, those of you who have followed the blog for sometime know that I have a fear of the dentist. However I would now say that this fear has become a deep seated phobia. I can’t watch people having dental treatment on the tv, the sound of the drill makes me sweat and I want to vomit. The minute the dentist has his hands in my mouth I want to be sick. It’s hardly surprising, I have had numerous horrific experiences at the dentist all the way through my childhood up to the age of 37 when I was finally diagnosed. I still have problems with dentists who don’t believe that local anesthetic doesn’t work properly on me and I have zero pain threshold for my mouth. Anywhere else on my body I have a high pain threshold but combine abject terror and a phobia and the minute a dentists tool touches a tooth the pain starts.

 

Unfortunately I found out I need a lot of work done on my back tooth on the right upper jaw. Due to EDS my tooth has crumbled, (plus I have a habit of clenching my teeth). The central portion of my tooth needs removed and then completely filled. If I had not suffered twice the agony of a dry socket I would have just asked for the bloody thing to be filled but remembering the pain from that means I am prepared to put up with 20-30 minutes of dentistry. But I am already terrified, tearful and just want it to be over. The earliest appointment I could get which would be easy to attend was 10th July. By easy to attend I mean hubby wouldn’t have to take additional time off work. Both the dentist and I are in agreement I need to be given some diazepam to get me through the appointment so I now need to book an appointment with my gp to see if they will prescribe me one tablet so that I can get through this.

 

As a reward for wearing my big girl pants my parents took me to a fabric shop in Exeter. I have never been to a fabric shop having bought all my fabrics online previously. Actually we had decided to visit the fabric shop long before they knew I had the dentist. The thought of seeing lots of lovely fabrics was enough to get me through the dentist appointment. I had decided a few days ago that I wanted to make a quilt for the lounge wall ( I will probably make a few so we can change them over at different times of the year) it is featured in this months Simply Sewing Magazine issue 43 ( page 67) designed by Janet Goddard.

 

 

As usual I wanted to make my own version of this pattern, the colours are lovely that have been used but they won’t go with anything in our lounge. So my trip to the fabric shop was vital so I could decide on my colour theme, which would be green ( it was a question of shade) and I wanted the triangles to be green but with wild flashes of colour. These are some of the fabrics I chose

 

In the bolt at the extreme left of the photo (tiny green triangle) is my plain solid colour that my triangles will be set into. The next 4 fabrics are Kaffe Fasset I got rid of the 6th bolt across which is the deep green with the leaves pattern and kept the one at the end of the table which is a FreeSpirit fabric. I sent a facebook message to Mr Myasthenia Kid to ensure he was happy with my choices as he is going to be living with it to. Here was his response!

 

So you can see he was pleased with my choice.

When I have recovered from my trip out of the house I shall make a start on it. However I do need to make some clothes as I have bought lots of fabric and made no clothes as I have been making some birthday presents which is why I can’t post any photos of my latest makes as it would ruin the surprise. As soon as the gifts have been given next month ( I know I like to be prepared and make stuff early!) I will post the photos!

I forgot I did make some soft toys, two little piggies for Jamie as he saw them in the magazine and on sewing quarter channel 687 (changed on 1st May)and 78 on freeview and asked me to make them for him. It’s the first thing he’s asked me to make something for him.

Pam

Just when you begin to think that life couldn’t get any tougher and you finally feel like you can take a breath again, the universe laughs and tosses you another curve ball. I wrote a while back that two people in my life were battling terminal illnesses, both of them had lung cancer. And whilst I knew what the inevitable outcome would be, that at some point I would face the rest of my life without them in it, nothing can actually prepare you for the day it happens.

 

As regular readers of my blog will know my Grandmother passed away on January 6th this year. Then on Friday 26th January I was awoken with the news I had been waiting for all night. That my dear friend of over 20 years had passed away. In the last 12 months I have been through 5 bereavements, in the past 6 weeks three of them occurred. To say I am at breaking point  is an understatement.

 

Losing Pam, is like losing a close member of my family. We have in those 20 years been neighbours twice, when I lived at my flat she lived on the floor below. When I was being shown around the house I am currently in, Pam leaned out of the back bedroom window stating house prices would drop should we decide to move in. When we came to view this house we had no idea that Pam lived next door, as our close friendship didn’t really develop until 2007 onwards, although we had always been friends.

 

To sum Pam up in a few words is impossible, when they made her they smashed up the mould, pulverised its pieces and spread them all over the globe purely because the universe knew there was only room in the world for one Pam. She was hysterically funny, whether she meant to be or not. She had excellent comic timing and I have lost count over the years how many times she made me choke on my tea or got me to snort it out of my nose. She would do anything for anybody nothing was too much trouble. She has helped me and Jay out of many scrapes at the drop of a hat. She was like that with everyone she knew.

 

I don’t think Pam every truly realised how many people loved her. I know she found it hard to comprehend why all these different people were sending her flowers, gifts and coming to visit her. She told me she felt truly blessed and been particularly touched by a lady who she had been to school with who had tracked her down after numerous years

 

Pam knew people from all walks of life, if you ever went out with her you could guarantee she would know someone. It always used to make me laugh that when I had tradesmen at the house to fix stuff, I would find them outside chatting to Pam, she either knew them or knew their mums. It was crazy the amount of people she knew. So I have a feeling when we say our final goodbyes the place is going to be filled to the rafters with those who loved you. So many people are hurting right now, none more so than her family. I am so grateful to have known you and to have had you in my life for the last 20 years.

 

2015 was not last year

We are now six months into 2017 but my brain is still failing to catch up after last year. I am still catching myself thinking that 2015 was last year or writing the date as 2016. It’s almost as if 2016 didn’t happen at all and throughout all the years of chronic illness this has never happened to me before.

 

Last year holds very few memories for me, much of it is a vague blur. When you look at what occurred last year it’s hardly a surprise. From the start of the year I started to experience what I believed to be migraines several times a week. Over the course of three months they became daily and at the end of March 2016 I collapsed in the shower due to the pain. It was immediately diagnosed (correctly) by my gp during a home visit to be a low pressure headache caused by a CSF leak. My gp spoke to my PoTs / EDS consultant who advised increasing my salt tablets (salt can increase CSF production). I spent much of April in bed, three weeks after I collapsed I was referred to a neurologist who specialised in CSF Leaks. First hurdle jumped through or so I thought.

 

Despite my referral being marked as urgent, my referral was refused. This is not uncommon these days as many hospitals now employ admin staff (not medically trained staff) to sift through referral requests to see which ones they can deny and which ones they will approve. At the hospital the consultant was based, insider knowledge from an anonymous source informed me 60% of referrals to neurology were being denied for spurious reasons. When I still hadn’t heard anything back from the hospital by mid May (and now in daily agony) my referral was submitted again. By the end of the week I had an appointment for 22nd June, the day before the EU referendum vote hence why I can never forget date, as it was discussed in my appointment. Now cynical me would say what a devious  strategy for hospitals to keep their waiting lists down by refusing to accept 60% of referrals. But with the UK at the polls today for the General Election you’ve probably been all politicked out, I know I won’t be sleeping tonight whilst I wait for the results to come in.

 

A week after my hospital appointment in June I was admitted to hospital for various tests and the hope that I would get an epidural blood patch done. Those of you who regularly follow my blog will know that I didn’t get an EBP done but instead started monthly caffeine infusions and occipital nerve block injections. With the introduction of the infusions and injections things did improve a little but I was still pretty much incapacitated every day to varying degrees.

 

On the worst days I would be in bed for 20-24 hours, unable to lift my head up off the pillow whilst violently throwing up. My bedside bin (lined) became an impromptu sick bucket and I became an expert at throwing up whilst lying on my side. My world really began to shrink, much of the time I couldn’t watch TV or use a computer / phone as the light emitted was too bright even with sunglasses on. I ended up listening to audiobooks or the radio to pass the time. The back of my head and neck were permanently red from lying on hot water bottles. Days, weeks and months merged into one, something I am not surprised about as this is the worst medical condition I have had to deal with.

 

I look back now and I am surprised that I got through this at all. I was lucky as I had the support of my husband, parents and friends. Someone without that support network would have really struggled. When I was able I could also get support from a Facebook group for those who have a CSF Leak, they helped me in so many ways. I now realise that I have probably been leaking on and off since I had a lumbar puncture in 2009. Although it’s not completely gone away, I still have days where by 2-3pm I have a headache start that will only go away if I lie down, I have quality of life back. Lying in a darkened room, completely alone for much of the time is no way to live. I have to be honest I don’t know how I would have coped if the pain hadn’t suddenly dramatically reduced just before Christmas last year. You don’t realise how much you have even when chronically sick before, until it’s gone. It really shocked me how quickly life as I had known it had been taken away.

 

Even though I know 2016 happened and have snapshot memories of things that happened, it does feel like life completely passed me by. It is a really bizarre situation. Obviously it’s quite normal at the start of the year to think the wrong year was last year, for example in January 2017 you were still probably thinking 2015 was last year (or maybe that’s just me?) However it’s June now and I am still struggling to accept that 2016 has been and gone, that 2015 wasn’t last year its two years ago now. It a really hard thing to describe unless you’ve been through a similar situation.

 

I realised just how caught up I was in still thinking that 2015 was last year when I had to correct myself when speaking to my hairdresser this week – again something I rarely had done last year was my hair! I explained that I was caught up in this brain trap due to losing much of last year to being so ill and she totally got it. Some people I have spoken to about it don’t or can’t understand how you can lose a year but realistically it must happen to many people for a variety of reasons. 2017 just seems so alien to me it takes a conscious effort to remind myself it is this year. One mantra I am repeating constantly is 2015 was not last year. I have six months left to recognise this year is 2017, let’s hope it’s sorted by 2018!

The last post of 2016

So here we are the last post of 2016, in some ways the last year has flown by in other ways it has been a drag (endless days of head pain will do that to a girl). One thing I did learn this year, well actually I learnt quite a few things this year. One of them being that medical staff do not warn you of the laxative effect of a caffeine infusion. But enough of the toilet humour that I always manage to sink to!

 

This year I have learnt the power of friendship, that dreams can and do come true. On 26th May 2016 I published Pipe Dreams Part One http://wp.me/p4zBAs-hj  and discussed my wish to raise enough money to purchase a new wheelchair and power trike attachment so that I could go out with my husband when he walked the dogs on Woodbury Common. Never in my wildest dreams did I believe that I would achieve this just over 3 months. On September 9th 2016 I took delivery of a second hand wheelchair and Power Trike attachment which I talked about in Pipe Dreams Part two http://wp.me/p4zBAs-jD .

 

To achieve my dream hubby had his back waxed and raised well over £1,000. I am so proud of him for doing this as I have seen him both cry like a baby and swear like a trooper when having his legs waxed for BBC’s Children in Need, many moons ago. He is my hero and if you fancy watching the video’s of him being brave and getting it done you can see them here in my blog post The Things You Do For Love – http://wp.me/p4zBAs-iL

 

When I first got the Power Trike attachment I promised that there would be a video shortly something in which I have been remiss. Various things have got in the way of putting a video on line, health, getting used to driving it and on my last venture out falling out of it and hurting my back. This Christmas I decided that I would venture out with the dogs on their morning walk. So later than promised here is a short video with commentary provided by Mr Myasthenia Kid aka Mr Morris. 

 

I want to say thank you to everyone who raised the  money, Abbie Wilson who gave up her time and her beauty studio to wax Mr Myasthenia Kids back, my two fundraising helpers Sharon Ross and Imogen Clark. Without you all none of this would have been possible, thank you. I would also like to thank Emmey Lou for her invaluable help along with her husband Mike.
So this is the very last post of 2016, I feel sad that the year is over already, I feel like I need another run at it.

So I wish you all a very happy 2017, may your dreams come true, may your health improve and may you love those in your life with all your heart. See you in January 2017.