Acceptance.

I'm still trying to make myself accept what happened to this year and how badly the virus affected so many families and it continues to do so. To say that 2020 has been a difficult year would be a massive understatement and it has definitely tested me as a person, my determination to keep going and my relationships with people. Its been hard not to be able to go out and see my friends and family, its been mentally exhausting living between getting supermarket slots and trying to get the most out of a 95 item basket limit and worrying when I couldn't even get anything and had to rely on the food parcels handed out by the government, which only really give enough food for one person when there are two of us here. I've felt isolated as the lockdowns and shielding have both limited where I was able to go and why. Over all, its been a year where I have felt more contained than ever. 

I would be lying if I said that my mental health hasn't taken its share of knocks. I've started working with psychology and psychiatry again to get me back on track but it's a rough ride at the moment with frustrations about the current situation, plus issues with pain and my downstairs parts not quite working properly (waiting to see Gynecology about that, have a scan up coming as well to check on the cysts and fibroid, but we also believe that endometriosis has also been causing many issues too). I confess, my health has been an all-around issue and it's not something that I can physically do about it myself. So seeing specialists will be a big part of the next 12 months going forward. Of course, my asthma has been it's usual self, I'm just glad to have my own nebuliser rather than having to rely on going to hospital, which would've been dangerous.

The hardest thing for me personally, was that when my family was suffering at it's deepest, I wasn't able to be there in person. It broke my heart knowing that I couldn't say goodbye to my Nan the way that I would have wanted. We did mark the occasion ourselves by playing her music and I told Jace stories of happy times, Christmasses and Birthdays and even times when I was just happy that I was at Nan's and was happy. I'm just thankful to have those golden memories that I can look back on and smile. I also had some precious momentos as well and those are going to be treasured forever, just as they were when they sat on Nan's dressing table at Baggots Oak. She's not gone, not really. She's always going to be a part of me and now I feel like she'll be watching over all of us, much like when we were small. I know she is one of the people who made me who I am and encouraged me to be creative, musical and how to sew and do crafts. So thats how I honour her memory.

It's been hard and it still feels like a massive piece of me is missing. I want to wake up some days only to find it was all a bad dream and that shes safe in her home being cared for. It does get easier but it never really leaves you. I'd never really experienced grief for someone like this before and how deeply it hurts still surprises me and still makes me think "wow... I never knew..." And it's true, until you experience it for yourself you don't know in yourself how you would feel about it. For 32 years, she was always there. of I have to fogure out how to live without that safety net. I'm just glad I still have my Mum and Aunty Rose. They are the ones who have had to be strongest through all this and they made me very proud. As for me, I'm taking everything one step at a time. One day at a time. 

So for now, I'm just making the best of the whole situation and making sure we're both getting everything we need.

Til all are one.

Wendy xx

Coming to terms

It's been a week now. I woke up this morning, as I have done since it happened thinking "please tell me this didn't really happen, it was all just some horrible nightmare and Nan is safely at home." Then I look at my phone. Reading the call logs from that awful morning. In my 33 years, I have never heard my Mum's voice sound so pained and vulnerable. When she said the words everyone dreads right now that their relative has Covid. And it doesn't look good. They're on "end of life" care. I asked how long, thinking it could be a few days? No, not even that. I wanted to get there. Told not to as it wasn't safe for me, my Mum was losing her mother and didn't need to lose a child too. I sat holding a Jemima Puddleduck toy for over an hour as I cried.

Then outside everything went all calm for a moment. Like the world was paused briefly, it was quiet. It was so eerie. Moments later my phone went off again, normally I welcome the sound of my phone as it's a song I like. This time my heart just sank and I knew. She'd just gone. It was so instantaneous and without any warning that none of us could prepare or soften the blow. I cried most of the day after that. I'd have brief moments of calm, then put of nowhere, it was like a dam broke and there was no stopping until the tears were done. Heartbroken wasn't strong enough to describe how deeply we all felt this. It was like someone had cut off a limb or something.

It also stirred up this deep anger. This virus has destroyed so much this year. It's devastated families like ours and it could've been avoided or controlled months ago. I felt almost resentful towards the people attending illegal raves, tourist spots or protests, the people who didn't adhere to the first lockdown and probably won't adhere to this one, because those people think that they're above the law and can do what they want because it never happened to them or their families. Thinking about how selfish they were and how they contributed to our family's loss. Maybe that's why I'm so angry right now, knowing there are people who choose to ignore the rules and that they're not having to deal with the consequences. 

To be blunt. If you're ignoring lockdown and just doing what you want regardless, you are a prat. A selfish, stupid fool. I know some are staying with other family members during the whole lockdown but not mixing outside of that, that's fine as long as you're not just going between each others houses every day. Please just stay inside and only go out if you absolutely need to. Nothing is worth putting your family through this. Our family is having to say goodbye to someone we love so much and it's a pain we are living with. 

Please be safe out there. 

Til all are one.

Wendy xx

10 years. Still going strong.

 This post has taken me a long while to put together and get some coherence to recent events. I was planning a kind of grandiose celebration of the blog and the journey it has taken me on. Heck I was even thinking of revisiting the earlier posts and see where my life has changed since October 2010. Then things changed. Then I had to face something that I wasn't ready for. Then again, who would be ready for these kind of things. 

I was having one of those quiet moments of reflection and as often happens, I end up wondering something random. 28th October 2010, this humble little page was born. I wanted to show how I wanted to navigate my long journey of my life and the many changes I faced and endured, the wonderful people who have been there to help me pick through the tougher times and the many MANY wonderful times we have had. It's weird to think that I've managed to keep this going for so long and that it's reached so many people. I'm thankful to people who have reached out to me to say how reading what I've written has helped them, even in a small way. But I also wanted this to show my growth and be a catharsis though diffiuclt times. Writing this blog has been as much about healing as anything else really.

Now this is going to sound really strange but I'm also grateful in a way for everyone who ever made life difficult or miserable for me. Because of them, I learned how to self advocate and not let them win. I learned to be less sensitive. But they also taught me that not everyone is nice so it's extra important to be kind and help those you can help.They taught me to be tough even through diffiult times and to always know that I was more capable than anyone ever gave me credit for. I've learned to survive and learned to thrive but there was someone in particular whose hand guided everyone in the family with love.

Growing up, I was always close to my Nan, Dorothy. She really was a special lady and someone I always looked up to as a kid. She was such a warm person with a kind heart and the kind of smile that filled a room with light. She loved children, growing up us kids were the light of her life, including Daniel, who is 18 years younger than I am, and Richard's children Scarlett and Jack. She took so much joy in reading to us, nurturing each of us to become the people we are today. It was Nan who encouraged me to be creative and showed me how to sew and mend clothes (an important life skill) and how to cook.

One of my faourite memories of Nan is when she used to read to us. She loved Beatrix Potter and I think she told me the stories of Tom Kitten, Jemima Puddleduck and Mrs Tiggywinkle more times than I can say. Along with the original Railway Series and other classic fairy stories. Birthdays were always special and I particularly remember one where my Nan and Mum had made a pony cake for me. But it is the little things I remember well. Something about a beaker of cherryade, a Thomas the Tank Engine VHS (which fortunately I have found the ones we actually had on YouTube) and canned Macoroni Cheese that pulls me in to a bubble. 

With Nan, you always felt safe. You knew you were loved and she would take pleasure in everything you did together. Even if it was something simple. It didn't matter as long as you were doing it together. She passed away last week and our family is still reeling. Just doesn't seem true that someone so close to us could be taken away so suddenly and unexpectedly. Right now, I'm either crying or staring out of the window just wishing I could have one more afternoon with her. I haven't been well enough to go and see her in recent times due to my condition being so unstable. It hurts more that I couldn't be there to say goodbye before she went, but not even being able to go to the funeral due to both the new lockdown and Covid-19 itself. 

So, the takeaway here? Don't take your family for granted. Tell them that you love them. Tell them how special they are. Keep them safe, especially right now. Wear your mask. Don't risk going out during this new lockdown unless you absolutely have to. Because some of you are probably probably think "oh well its never going to happen to me or my family", doesn't mean they won't. And if it does happen to you, may you and your family find peace right now.

Til All are One

Wendy xx

Pain is annoying.

It takes a lot to admit to yourself when you're struggling. It takes even more to reach out and talk to anyone about it. There is a lot of stigma when it comes to mental health and with the current situation and all, it's even harder to reach out and talk to someone. Especially when it's someone like me who has always been of the mindset that keeping it to myself is usually better than taking up an appointment with a doctor who could be dealing with something more important. Thing is, I've never been able to put myself first. Maybe it's because I'm always too busy putting everyone else's wellbeing before my own and it's sometimes meant that th little niggling problems get ignored until they get to a point where I'm unable to hide it.

We already knew that my "down belows" were a problem. I've had PCOS since I was 16 and it's even put me in hospital, especially when a particularly nasty one burst and I felt so ill for weeks prior. It was then when I had my first internal ultrasound. I've had a fair few and each has shown more cysts as well as a fibroid. I also have a retroverted uterus (basically where normally a woman's uterus tends to tip forwards, mine tips backwards), but recently things have been more difficult. I mean my periods have always been erratic and painful, most women have menstrual cramps but this is on a whole new level. This feels like a hook pulling from inside my cervix and literally has me unable to move, considering the regular pain I experience as well. The doctors think its endometriosis, a condition where the uterine lining forms outside the uterus and causes scarring and adhesions. It's a grim diagnosis to be sure.

So, considering that and all my other problems, not to mention the fact that I don't want children as it wouldn't be fair to them or Jace with my body the way it is, the consultant and GP are thinking when it's safe to do so, due to Covid-19 and my general health anyway, it may be better to have a hysterectomy. It's not something I'm taking lightly. It's something that isn't without risks but it may be better for me in the long term. Still waiting to hear about my hernia repair as well, so that needs chasing up too. It'll mean my body may go through some very peculiar changes but who knows? Maybe it could lead to a better quality of life.

The other thing that has been getting to me has been the general pains I've been having due to a multitude of conditions all mounting up. I'd been coping by taking my Oramorph a bit more but that was inexplicably cut, something the doctor agreed was very cruel, without reviewing the long term morphine I use, Zomorph. I've been on 20mg twice a day for a long time and was started on it by a consultant. I've found it has helped and gave better control than tramadol was. Just as my body has taken a battering over the last 10 years, it's fair to see why that would get worse over time. The thing though with morphine is that it can be a dangerous thing as it's addictive and can cause some rather nasty side effects. 

Being in pain constantly is not fun. It's frustrating and there comes a point where you start to wonder if it's even worth it anymore. My mental health recently has been very bad and I'll admit there's been some moments where I felt like I'd had enough and just wanted it all to stop. Just to not feel like this for a little bit would be wonderful but unfortunately it's just so complicated. It's frustrating when people just assume that taking painkillers is the best step forward. The thing with painkillers (I really don't like calling them that as they don't really stop the pain but more like they mask it to make it more tolerable) is that there's so many things to consider. Chucking more morphine in to a person isn't going to make them better. 

Pain is your body telling you there's something not right happening inside you. Some people can deal with it better than others can but it's well worth saying that until the underlying cause of the pain is put right, it's never going to go away completely and it would be irresponsible to throw pain medication at patients with some false hope that they'll go away and get over it. Unfortunately there's too many people who have strong opiates thrown at them unchecked or reviewed for years on end. You have to ask the questions as to why such things are needed and see what else can be done. And sometimes its good to rule out the psychological side of things. 

That was interesting but worth doing because sometimes some people experience physical "pain" to stimulus that isn't there or for no real medical reason. I was aware of ruling this out early as I wanted to be sure that it wasn't my mind playing with me. It wasn't, we've seen the actual physical aspects of my conditions and know well that it's definitely medical. It still doesn't make it easy but we knew that we needed to look at this and get a plan in place. Since increasing my zomorph I've needed less oramorph but I've been having more acute pain in my lower chest again so we'll have to see where that goes. 

I'm just hoping nothing serious is happening. 

Til all are One.

Wendy xx

Catching Up.

August 1st, shielding has "paused" for now. I'm going to be honest though, I'm not sure still that it's wise to go shopping or anything like that just yet. I've been venturing outside the house, even if all we ended up doing was hacking at those shrubs outside the front door because they were getting a bit wild (so tempted to run out and attack them with a strimmer but common sense prevails). It felt so strange being outside though after being cooped up.

One thing I had hoped to attend, but it was cancelled due to Covid-19 was the annual Transformers convention TF Nation. Instead, the guys behind it did a virtual event called "The Big Broadcast of 2020" (named after an episode in the G1 cartoons) and it was incredible. Hearing from writers, artists to even voice actors of some of the original cast, even a bit with Stan Bush who gave us acoustic versions of "The Touch" and "Dare" from the 1986 animated film, which was just perfect. Of course next year (hopefully) we'll be there and it'll be a fantastic weekend.

For me, being inside for so long has been a bit maddening really. I am still a very active person (well as active as one gets when in a wheelchair) and I really like doing things. I think that probably annoys Jace as he's always catching me up to something and I am very protective of my independence. I've been independent since I was very young, something that I am very proud of. I enjoy getting up and doing things. I've always tried to fight for my independence and push myself. Through the pain and breathlessness, to me its a challenge to overcome. And it's not in my nature to give in.

It's been such a long journey. Not always easy, sometimes I've felt like I couldn't do it anymore. Admittedly recently has been a lot harder. I've got a nasty chest infection and pleurisy. Like many people with brittle asthma, my lungs are scarred, they don't like exchanging carbon dioxide and oxygen and deep breathing is currently extremely painful. It's hard to explain as many doctors don't understand how painful asthma and it's after effects can be. The worst thing is trying to explain to a doctor who doesn't understand or have the knowledge of me and my specific case and feeling like you weren't believed or treated like a junkie or an addict because they don't know exactly what this feels like.

I don't want drugs. I just want to not feel like someone is kicking me very hard in the side when I take a breath. I want to sleep without being awakened by pain, which stresses me out as I end up getting up early and not waking Jace up as it's not fair to disturb him because I'm in pain. I don't talk openly on Facebook about it, purely because if I was to post to my page every single time I felt pain it would be constant and I think that people would get annoyed with me. Besides that, posting about it all the time and not trying to do something to ease it, to me at least would be counter productive. I'd rather find a way of coping and a way to ease things. I'll admit, right now is difficult as I'm generally not feeling great but I'm getting through it. Kind of. 

I've had to have some very frank and honest conversations with the doctors and even with Jace to uncover the extent to how I was feeling physically and mentally. Even admitting that there's been some very dark and intrusive thoughts about things I find very hard to talk about. The thing is, people who have chronic pain problems, often finding them difficult to manage medically, sometimes struggle mentally too. Having complex chronic pain which is hard to handle is rough, it's tiring and it does eat away at you. I'm hoping that the tweak to my long term pain relief will make things easier to deal with. But we have other options to look in to.

Til all are one

Wendy xx

Shielding.

On that Monday morning (23/03/2020), it started with a text. And a letter. Both of them informing me that due to my many health problems that I was considered to be at extremely high risk should COVID-19 get in to my system. Meaning that if I was unfortunate enough to get the virus then there would be a very high chance that I wouldn't survive it. That in itself scared me. How could it not? This virus can and had already killed so many, even without the patient having complicated medical issues. It's just not worth the enormous risk. I then had to accept that for 12 weeks, I wouldn't be allowed to leave my home. 

I'll admit that at first I was annoyed. But I do understand that it's for the best reasons. I've done closer to 3 months of shielding. You thought lockdown and social distancing has been tough. People who have been on lockdown have at least had the freedom of a daily exercise but for us shielding it's been a case that we haven't been allowed out of our houses which has been beyond frustrating and isolating. I've not really blogged because I didn't think it would be of interest to hear how I spend the day's pottering around the house and doing a good clear of the living room area. 

I think the most annoying thing has been the lack of variation and no where has this been more evident than in the food we have. It's been nearly impossible to get a shop online so we've been receiving a weekly food parcel and occasional Morrison's food boxes. The only thing is that there isn't really much by way of variety. Or perishable items like eggs and cheese. Thanks to a friend, Karen, daughter of the lovely Penny, the cheese side of things is taken care of through a company called Mousetrap Cheese Shop. I've always loved cheese and trying new types so this has helped a lot. Not sure why cheese is something I like. I've always enjoyed buying different types and loved going to the cheese counter at the supermarket. Sounds like a weird hobby considering that dairy upsets my Crohn's but everyone has their pleasures. I've found some new ones that I've really enjoyed and become regular items. Some however maybe not so much. I brought a famous cheese known as "Stinking Bishop" and boy did that live up to the name! Upon unwrapping it, I'm not kidding, it actually smelled like my old black Vans (those things were so bad it was legendary).

I think the hardest thing about "lockdown" has been knowing that as lovely as it's been weatherwise, I've had to stay inside and not go out for little trips in my chair or even consider do anything normal like going to the shop. I still am not allowed to do much and still have to go by certain rules. Being in my home for 3 months without any time away has meant, as mentioned before, that I've been spending time improving the place and we've started getting some semblance of order, especially in our living room. All that needs doing in there is stripping off the old wallpaper and a lick of paint and it will look a lot better. Our home is precious to us and it's something we know we're lucky to have. It's also been something of a test to how strong our relationship is. So many relationships have broken-down but not ours. We haven't always had the easiest of relationships, due to distance and my disability but we've never lost sight of what's important to us. 

Til all are one.

Wendy xx

Introspection

Its been nearly a month since I was given the letter saying that I was to be shielded as I was on the "Extremely Clinically Vulnerable" list. It's not been easy as I have always liked having the liberty to come and go as I please. That being said, I would definitely prefer to be safe and avoid Covid19, which for me would be an almost definite death sentence, than go out to the shops or something so I am complying with it. 

All this free time has been giving me ample time to think. When I started this journey, nearly 10 years ago if you can believe that, I was in a very different place physically and mentally. I was feeling alone and wanted so much to be able to change that. I hated how poorly brittle asthma was understood and I wanted to show the world the reality of what I was going through and why I was finding it difficult to do what I needed to. A lot of people didn't want to believe what I was saying and didn't understand why what they perceived as "just asthma" was making things so difficult. 

The thing is, this whole thing has been a process. It has been full of change and personal growth as well as a few moments where things were really bad, I'll spare you the nitty gritty details. There's been battles that I've fought, won and rehashed to fight again. People have come and gone and I've moved on to a better and brighter home. My journey isn't completed though. My story isn't over and there are many things still to said, done and conquer. I'm tired but the only thing I can keep doing is move forward and that's what I'll do.

I know I don't post as often as I used to, probably because I sometimes find it hard to write about day after day. I mean, you don't want to read a daily slew of "I woke up, did meds and went back to sleep. Watched (insert title here) in bed. Got up and had a poop.." and so on. It's grating to see that kind of thing on Facebook, imagine if my whole blog was just that! I take my time over my posts and try and keep it interesting and meaningful. Even if I start a blog on Monday and then come back to it until it's ready on Friday. I also try and find positives to blog about because I don't like to complain all the time, which could so easily become part of these kinds of blogs, because I am actually a relatively upbeat kind of person. 

I've had people leave me mean comments but I've learned to be a bit more resilient and less sensitive. Heck I don't even reply to the nasty messages or comments as they're not worth it. They're usually just trying to get a response from me and I won't rise to it. I'll rise above it instead! 

Til all are one

Wendy xx