Weird Week

The last week has been really revolting on the vertigo front. The air pressure due to thunderstorms developing ( we were really lucky and avoided them but it was so hot and sticky!) made my ears misbehave leaving me with a couple of days where I felt like I was constantly spinning. Despite all that I have still managed to get some sewing done and even give a lesson to a dear friend of mine.

 

I am having to write this post uber early (Sunday evening) as on Wednesday, which is usually blog post writing day, I am on a course to learn how to use my over-locker. I am already starting to panic that a day learning on a course is probably going to be too much for me, probably? Who am I kidding? This will floor me especially when my health isn’t great due to this ear problem.

 

I have had to grab whatever moments I can to do sewing this week as quite a lot of the time I just haven’t been able to. Thursday I had to quickly prepare fabric ready to teach my friend Imogen some basics on the sewing machine. I decided for her first lesson I would have her make an envelope back cushion cover. I decided that having her sew straight lines on calico would probably drive her around the twist. Imogen is naturally creative and she thinks like a sewist. I decided I would cut out all the fabric out for her and overlock all the edges. All Imogen would then have to do is sew some straight lines and she would come away with a finished item. I finished all the prep work and then ended up going to bed as the vertigo became so bad I couldn’t walk in a straight line.

 

On Friday Imogen came for her lesson and our bi weekly catch up. I got her to practice rectangles to begin with on some calico as she would need to know how to pivot the material keeping the needle down. She did really well so I let her loose on  the material – pink with unicorns. She did a fabulous job and I tried very hard not to be constantly leaning over her by playing on my phone. She was so surprised when she had finished sewing it and genuinely pleased with herself. She did a fantastic job. Although she will probably kill me for posting this photo!

 

 

I was exhausted on Friday night and was asleep before 7.30pm. I also managed to forget to take my evening meds which meant I went into withdrawal, thankfully it wasn’t as bad as it was last time when I wrote about it here https://wp.me/p4zBAs-m6  but it left me feeling pretty off colour all of Saturday. However I still managed to get the rest of my fabric cut for my Kaffe Fasset / Free Spirit fabric quilt.

 

 

Today (Sunday) I have finished my wall hanging that has been waiting to be completed since it arrived in April. During the week I quilted it.

 

This left the scrappy binding to make and then attach both tasks completely new to me. Thankfully there are lots of videos on Youtube showing you how to make scrappy binding – this is where you make your binding from scraps. Thank goodness my Creative Grids Stripology ruler arrived during the week, making cutting strips of fabric an absolute doddle.

 

I then sewed by machine the binding onto the front, which included mitred corners – proper mitred corners not the bodge job I have done previously. Then once the binding was sewn onto the front I pulled it over the edge onto the back and using clips held it in place whilst I hand sewed the  binding to the back of the quilt.

 

 

The hand sewing of the binding onto the back of the quilt didn’t take much time at all. I made sure the stitches were really small so they are barely noticeable, it’s the neatest any of my quilts have been on the back. Finally the wall hanging has been completed, we now need to decide how we are going to hang it on the wall.

 

 

It’s been a really weird week with my ears playing up, forgetting my tablets and ensuring that I have enough energy to make it through Wednesdays (6th June) course which is also my 10 month anniversary of giving up smoking, Thursday 7th June it will be 8 months since I started sewing, since then I have bought a further two sewing machines and an overlocker!

Tuesday night the wall hanging was in situ!

 

Jamie did a new video yesterday!

 

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!

20 Things about me

As it is the Easter holidays and here in the UK the weather is glorious for a change, I thought I would just do a short blog post today. So here it is

 

1. I am 43 years old but I am staying 40 until my 50th, if anyone asks!

2. I am married to Jay and have been for nearly 17 years. We have been together over 20 years

3.I own three Weimaraners

Mollie

Willow

Frankie

4. Jay and I got married in Sri Lanka. Its our dream to go back one day.

Sri Lanka

5. I have Ehlers Danlos Syndrome hypermobility type

Prayer sign

6. I also suffer from PoTs – postural orthostatic tachycardia syndrome / severe autonomic nervous system disorder

7. I have a degree in History.

8. I collect Emma Bridgewater Pottery and have also managed to get my husband into collecting it too.

 

9. On the 29th March this year as I accompanied hubby in the car on his way to walk the dogs, we came across a man playing the bagpipes in the carpark

 

10. I have been vegetarian all my life but this year have become what’s known as whole food plant based, which is essentially a vegan diet that is very low in oils / fats and no processed foods.

Tofu “chickenless” fingers

 
11. I love posting photo’s on Instagram and I also love seeing others photos. You can find me @racheljillmorrismcgee

12. Emma Bridgewater’s social media team have contacted me twice now for permission to use my photo’s in their social media campaigns

 

13. I am very lucky that I have a great group of friends that keep me going when things get tough. I know many people who have chronic health conditions that don’t have the support network I have so I am truly grateful for this.

14. I am currently teaching myself to draw after a break of nearly 30 years. It’s hard going as I struggle to grip a pencil for more than a few minutes at a time. So a twenty minute lesson can take me days to complete. I am really enjoying it though.

 

15. I have been blogging since 2008 but didn’t  blog regularly until a couple of years ago. I have written more than 300 posts.

16. Despite being a blogger and talking about all aspects of my life I am quite a private person.

17. Hubby and I used to breed Weimaraners, Mollie has had two litters of pups with nine puppies in each

18. I love listening to the radio but I don’t listen to music channels. I love Radio 4, Radio 4 Extra and The World Service. On a Sunday night I will also listen to Radio 3 if they have a play on. The radio became a massive part of my life when I first became ill as I would spend hours in bed resting as I was so exhausted all the time. Radio was one of the few things I could do.

19. As I am a massive radio listener I am also a big fan of the Radio 4 soap The Archers about a rural community in the made up village of Ambridge.

20.  My favourite place on the planet, other than my home is Woodbury Common.

Woodbury Common

Unbroken

Back in December 2016 I wrote a blog post called Broken, which you can find here – https://themyastheniakid.com/2016/12/15/broken/ in case you missed it.

I was writing about a friendship that had reached breaking point. Although by the time the piece was written, we had discussed the situation and apologies had been made and accepted, I wasn’t sure if I could let the anger go and be able to move forward, to be honest at that point I wasn’t even sure if I wanted to. We had talked but all it had done was make me angrier, probably because I had kept quiet for so long that I was now truly having to deal with all those suppressed feelings. I knew for our relationship to continue I had to deal with that anger and effectively let it go. If I didn’t there would be no future in our friendship because I would be forever looking backwards and not forwards. In working through that anger, I became more sympathetic and understanding of the whys and hows this had all come about. I had to shoulder some of the blame for the situation because I had been blinded by my own anger, I couldn’t see the person before me was desperately unhappy and broken.

 

It took time (I know we are coming to the end of March so it hasn’t been masses of time) but my friend and I are back to where we were before this hiatus. When I wrote the first piece I didn’t know if we would ever get back to where we were. However we are back and actually better than we have been in years. All it took was an honest conversation, one that so many people shy away from and act emotionally rather than rationally. This means looking at the good, which was 98% of the time in 20 years and understanding that 2% was out of character and down to a horrendous amount of personal tragedy.

 

I am not saying every relationship can be saved, nor am I some sort of tree hugging hippy. There are times in our lives when you have to say for the sake of  your own mental health enough is enough. Sometimes people cross a line, their words or actions can’t be forgiven let alone forgotten.

Toxic, unhealthy relationships should be terminated at the earliest possibility. Far too many of us give abusers (because that is what they are, they abuse our friendship, our trust, our dignity) excuse after excuse for their behaviour, we take on the blame (and possibly shame) that should be squarely planted at their door because we are people pleasers. People like that though are never pleased by your actions as they will always find fault, they are emotional vampires, sucking you dry and tossing you aside when you are no longer any use to them or they have begun to suspect that you are starting to see them for what they are. That was never the issue in my friendship but I have had other relationships where this has been the case.

 

So not all relationships can be mended and I am not pretending that they can. Sometimes it is far healthier to just call it quits, sometimes people outgrow each other or want different things from life. I realised that this wasn’t the case with my friendship, yes I had been hurt but I had to take a long hard look at the last 20 years and ask did the good outweigh the bad? Once I had accepted that there was more good associated with this friendship and this person was one of the few that had stuck by me since getting sick, the anger started to dissipate. I won’t lie the first couple of meetings after our discussion were a little awkward, we both felt it and openly talked about it. We looked at ways that it could be made less awkward, we discussed that it was probably the need for time to pass and the need for more regular meet ups that would solve this. The whole point was that we came at the solution together, so we knew that the relationship meant a great deal to both of us, it didn’t feel like one person was doing more than the other, which can lead to resentment.

 

I am no longer angry about the things that happened before and I am not holding onto any grudges. I have let all of that go, it was a natural process not something that was forced. When we started talking more honestly and openly things improved rapidly. It wasn’t easy for my friend either, there were times when they needed reassurance. They needed to hear from me that things were back to normal, I couldn’t expect them to read my mind, it had to be said out loud, so they knew what I was thinking and feeling. The words need to be spoken and assumptions not made. We are back to enjoying each other’s company and there is no anxiety for me anymore as there had been previously.

 

I have learnt a great deal from this experience, I have never previously bothered mending a friendship that I believed was broken beyond repair. Before I would have just cut this person out of my life without a backwards glance. This has shown me that some relationships are worth working on and saving, rather than taking the easy option and avoiding confrontation. I know now that I should have spoken up sooner rather than let things fester. By failing to communicate I was as much to blame for the friendship floundering. I now know that it is far better to voice concerns than hold onto them. There will be bumps in the road, there always are in life but it’s how we address those bumps that matter the most.
We have come a long way since my blog post in December last year but things have definitely moved from broken to unbroken and more beautiful than before.

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.

Broken

For the last few weeks I have been left wondering how you fix something that seems broken beyond repair? How do you move past the anger and pain? How do you get to a new normal? I am left scratching my head trying to work this all out. I have had to deal with so many broken things, body, mind and relationships that have fallen by the wayside. When do you say enough is enough?

Before anyone psychoanalyzes this one, hubby and I are fine, perfect in fact. This year he has provided me (as he always does) with unwavering support through this difficult year. I can’t thank him enough for that. There have been days where he must have been almost hysterical with fear because I was so sick but he stayed strong. He made sure I knew I could count on him when the chips were down and there aren’t many people these days that I could say that about.

For 9 years I have had to deal with a broken body (well since birth but it really raised its ugly head 9 years ago) and on the whole I am fine with that. Of course there are days when I ask “Why me?” or I think that I can’t possibly go on but I do. I can forgive myself those moments of weakness or perhaps vulnerability is a better word. Even though pain wise this year has been horrific I am still managing to do things to make myself happy and enjoy life. I think that is something to be proud of.

I have in the last nine years had to deal with many broken relationships. People I thought would be friends with forever have dropped by the wayside but not before treating me like crap. I should take some of the blame here, not because of ill-health but for allowing people to treat me that way. I am an incredibly loyal friend and will excuse bad behaviour up to a point. However at some point a line in the sand has to drawn, it just I can take a bloody age getting there. When I do though the fallout (pun intended) can be catastrophic, people don’t like being confronted with their bad behaviour. I am not for one instance say this believing I am perfect, I am not. When bringing up the subject I always say “I am sure there are things I must have done that have annoyed you”. I give them the opportunity to address issues so it’s not one-sided because if things are ever going to be put right the exchange has to be honest.

Maybe because by the time I deal with the situation there have been a series of events, such as not contacting me unless I contact them, not coming to see me (I can’t go to see them as I am virtually housebound although I would love to), being rude or overly critical etc, etc I have the examples to hand, they are on the back foot unprepared for the conversation? Because for so long I have let things slide and given them the benefit of the doubt. I know that something must’ve happened for them to change the way they have treated me. However from my side it seems the more I do for someone, the more they expect, then because I am forever trying to please them, I get taken for granted and the friendship gets abused. My inability to nip bad behaviour ( what else can you call it?) in the bud seems to give them the green light to walk all over me.

I hate confrontation with those who are close to me, I am too worried about hurting their feelings that I end up not expressing my own. I wonder if it is because of all the bullying I faced during my childhood that I don’t want to rock the boat and tell the person what they are doing is not ok? I can be loud, brash and seem to have endless self-confidence but really I am an anxious hot mess a lot of the time. I worry over stuff that shouldn’t be worried about, I worry late into the night about things that haven’t happened, I can get into a rut of worrying that can be a difficult cycle to break. I know it’s not healthy to be anxious or to be afraid of expressing what you want or need. Most of the time I am not worried about what I will say but what will happen once it’s been said, as the words can not be unsaid. I should however start putting myself first and starting from now that is exactly what I am doing. I will no longer have people riding roughshod over my feelings in an attempt to make themselves feel better.

At the moment I am only filled with anger, I know that is clouding my judgement. The extent of the anger only reinforces the hurt I have felt and the fact that I do care deeply about this friendship. If it had been anyone else they would have been told to go once this pattern of behaviour seemed to establish itself. I have asked myself the question over and over did I do something to deserve this? Have I ever done something to deserve this and does it make me a bad person if I cannot think of anything but the times I have bent over backwards and supported you?

In some cultures when an item is broken like a china bowl, they fill in the cracks and cover the repair with gold leaf, to make it unique and more beautiful than it was before. I wonder if that is possible with human relationships as I am not without hope on rare occasions.

So I find myself now in a situation where the conversation has been had but now I am unsure of where we go from here. It no longer feels the same which is something I never thought I would say. Do I concentrate on the good times which account for 98% of the time and ignore the 2%? Is it worth resuscitating, this hollow corpse of a friendship, which it has been for a while or now because apologies have been made do we forge a new relationship? I am unsure that I want to open myself up again to the risk of being hurt so badly, picked up again only to be dropped when something better comes along? Do I try to forget what has happened or do I forgive but never forget? Does shared history count for anything? Is I am sorry, enough?  When is it broken beyond repair?