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

A New Threat.

Unless you've been living under a rock over the last few weeks, you'll be well aware of the COVID-19 virus that has been taking its toll on the world. Seems like a day doesn't go by where we aren't being told about unfortunate souls who are fighting for their lives, and their families' agonising wait for them to recover. Then you hear about the foolish behaviour of panic buyers, food shortages and people not able to get the basics, but it's also been a lot of communities coming together to help each other. The latter gives us hope and solidarity, we need both to overcome this and protect the vulnerable and elderly.

Fear and panic are the enemy. In the modern world of the 20st century, we have become increasingly reliant on living our lives in a bubble, accessed from a screen. We often don't even know who our neighbours are, let alone how they're doing. I do understand that we're all suddenly having our world shaken and it's terrifying that something like a virus is as vicious and incurable (viruses tend to come, have their fling then you (hopefully) get better). I do think the best thing that could come from all this is that we relearn the community spirit and how to help each other that our grandparents and great grandparents relied so much upon, except theirs was a war of munitions. Ours is biological.

People also need to stop stripping every morsel of food from supermarkets. Hoarding all the food, toilet paper and other things (or much worse, selling on essentials at a high price) is just selfish and greedy. It's sad that people are doing this and it's the vulnerable who can't get out much (or like me, not at all) who are unable to get some bread, milk or even food. And who really needs 5 tonnes of canned food?

Right now, the best things we can do is social distancing and self isolation. We all need to pull together and prevent this from spreading, maintain hygiene and protect our most vulnerable people. Make sure that we use the technologies we have to communicate and make use of Facebook and other platforms to forge communities. When the virus is finished, we'll need to pick up the pieces and share what we learned from it. Who knows, your community could be brought back together and we could start helping each other again? 

How good would that be? So, friends, please stay safe and let's all get through to the other side of this!

Til all are one.

Wendy xx

From My Perspective

OK so another thing I get asked a lot is what is an asthma attack like? How do you know when you're having one and how do you deal with it. I haven't really ever gotten completely in to this before as it's a really difficult thing to discuss or describe to anyone whose never experienced it. Maybe a part of me finds it hard to think about things like that as, to tell you the truth, it's not a fun thing to go through and it's certainly not something that I, or anyone who has seen it for themselves, take lightly. I'll tackle my own insight to it by stages, because that seems to be a logical approach. But I'm warning you, this isn't something that is incredibly hard and I've never really talked about the whole process in much detail. To be totally honest its not easy to put in to words and it's taken me this long to really think about how it happens and when we know enough is enough. It's difficult with severe asthma as you're pretty much having what some consider an attack most days. It shouldn't ever be that way, but it is.

Please don't take this as medical advice or instruction, asthma attacks can be different from person to person. This is purely me explaining as best I can about my own experiences. If you are experiencing problems with your asthma, don't delay getting help if it's bad and follow your treatment plan.

Stage 1:

So, at the first points where I'm starting to think "OK, this is my asthma" and where the process begins. Sometimes there's a definite trigger (cigarette smoke, dust, stress and many other things). Sometimes it just kind of happens out of nowhere. Usually with me, it starts with my chest feeling uncomfortable and I could be coughing more or wheezing a bit. Generally it makes you feel quite ill and when it starts with me, I can be a little bit grumpy or just want to be on my own (no one around me means no one to snap at, that's more my own desire to not upset people). I also become quite flitty and struggle to stay focused on anything for too long. At this point it's not bad, just the beginning of things and I tend to try and get it under control. Sometimes it works. Sometimes, not so much.

Stage 2:

It's at this stage that I'm more than sure that it's my asthma and time to use my nebuliser. I tend to use my nebuliser every 4 hours for maintenance nebs (morning and evening with my steroid preventer nebuliser, budesonide) of salbutamol and ipratropium. For attacks, I can have 1-2 extra salbutamol but at this stage we tend to be a bit more on our guard. For the uninitiated, a nebuliser is a machine that pushes air through a chamber where a liquid medication is. The result is a fine mist which I can inhale. The dose is much higher than the standard dose of an inhaler. The thing with nebulisers though is that there is debate among patients and doctors that a standard inhaler, used with a spacer, can be sufficient for most asthmatics but there are some patients who respond better with nebulisers. Just depends on the person. Usually by this point, there's an obvious wheeze and I cough like a 20-a-day smoker (I don't smoke, never have and never will). 

The next part is a bit complicated so bear with me. 

Stage 3. A.

This part depends on what happens with the nebulisers. Obviously it can have one of 2 outcomes. This is what happens if the nebuliser does the trick. I'll sound a lot less wheezy and my breathing kind of settles. The protocol in this case is to take 20mg prednisolone and rest. The full effect of an asthma attack actually takes an awful lot out of you and you feel it most in your chest muscles. Asthma can make breathing really laborious and it is like running a marathon. Imagine your chest feeling like something has enclosed around it but you have to keep breathing, you're going to get really tired, really fast. Often I tend to sleep for a bit, turn oxygen up if my sats say I need to and generally take it easier. If it flares up again then we go straight to the other part of this stage.

Stage 3. B.

So, what do we do when the nebs don't work or I flare up again after treatment? Unfortunately this is the stage where we know we can't beat this ourselves and know we need professional medical assistance. This is when we call 999 and get an ambulance. Over the years  I've built up a strong rapport with local paramedics, they know me and (importantly) they know how bad I get and how rapidly. They know that when they arrive, chances are, I'll be sleepy and probably unable to say much. After a check and they take over with any more nebs or oxygen (sometimes IVs) and we go straight to hospital. It's not that scary after the amount of times its happened and the local A&E are amazing too. Usually the priority is to get me stable and find out if there's (and usually there is) anything underlying like an infection. Usually by now, all I want to do is sleep but at the same time, I get anxious about being by myself. 

Never really understood that. When you're having an attack and it kicks your ass, you are both so exhausted and in so much pain you want to just sleep but at the same time, you just kind of want someone there to get you past the inevitable crash you'll feel afterwards. Unfortunately though, thy usually decide to keep me in for a few days to either get my strength back or start getting over having any infection. 

Stage 4:

The aftermath. This starts with the urge to sleep. And after an attack, I've been known to sleep for most of the day afterwards. It's like my body is saying "thank frick that's over..." and I just want to sleep and start recovering. The only problem is that as I tend to get admitted, I have to do this on a busy hospital ward. Between being in a room with 5 strangers and being visited by doctors and nurses it can be tricky to settle down and get some rest. The routine in hospital is a lot different to being at home. At home I'm able to manage when I take meds, have meals and sleep. It's hard to readjust when you get home but usually after a few days I find my groove again.

So I hope this was informative and interesting for you guys. It was actually kind of cathartic for me as I do tend to keep things quiet unless it's a big thing that's going on. I hope too that giving you an insight to my world a little bit, it will help you understand a bit more.

Til all are one!

Wendy xx

Still Going Strong.

Ever look back on something you posted or said a few years ago and thought to yourself "OK, that's a sign of how far I've come." and then smiled a massive grin because you know you got there in the end? I get that some days when I look back on my Facebook posts, blogs and even if some old emails surface. Life, it's about change and growth, moving on from things and making your lot in life better. In the last decade alone, I have changed a lot of my attitudes and learned how to be an adult. I've faced challenges head on, sometimes I've fallen down but I've always gotten back up, found a way forward. 

It's weird to think that over 10 years ago, I was about to move from my parents in to my first ever place. I was living the life of a typical young woman at the time and I was working. My asthma was still a butthole but it was tamable with my inhalers. Life was pretty sweet. Those few months at Room 7 held memories that I still smile about. When it was just me, Patch and my tiny hamster Zeke. I learned a lot about life in the first 2 months than I had ever known in 20 years and it was really a time of emotional growth for me. I learned how important it was to pay bills, buy my own food and do all the things that, up until that point, other people had done for me. It was tough and there were times where I had to juggle my money about but it made me stronger and I learned about being independent.

That's the thing about life really! It's a journey that everyone goes on, sometimes we walk together for a while and sometimes we walk by ourselves. We choose the paths we go on and no other can be held to account for bad choices (and trust me when I say this, we all make them but it's what we do afterwards that's the key). It's your choice whether you stagnate or pull your big-girl (or boy, depending on your gender of course), face the good and the not so great consequences and most importantly, learn from it. There really is no point in wallowing.

I certainly didn't wallow and stay at Stanley Close when it was becoming more difficult for me to live there due to my disability getting worse. To be honest, maybe it was the right time for me to move on as I just didn't suit the area or my surroundings anymore. Living so close to your neighbors can be very stressful. Don't get me wrong, there were some great times there and when Becky lived with me we had a lot of fun experiences. Living with Natt for a while was great fun too. I don't think that I would have coped with having to accept the way my life was changing and the things that I'd need without his constant support. He even supported me when I moved here. I even reconciled with my mum after 5 years (honestly it has been amazing and now we have a better relationship than ever).

Honestly though, I can say with 100% certainty that moving to the bungalow has really improved my mental state as well as my quality of life. I love waking up to birdsong rather than bratty kids. I love that we don't hear police sirens every day. It's peaceful here and living with Jace has been wonderful too. We've built a life here together and it's more than we could have hoped for. Admittedly the process of getting here wasn't easy and there had been times when I could have easily just given up of not for having the support of the people around me. I really was getting to the end of my rope and never ever left my bedroom because it was the only place I could hide away from everything. My depression was getting too much and my mind was going in to places that I must admit I felt I was just getting deeper. The noise of being in an area like Abbeydale and living between people whose idea of fun was blasting music in a competition of who could be the most obnoxious was wearing me out. 

Funny thing, the first month or so here, I would be so unsure of myself and not used to the quiet that I spent more time in my chair just to make a trip of bedroom, living room, hall and back again than I could count. It was probably quite a sight to see me zip between the rooms just because it was was so quiet that that I couldn't figure it out. Even longer before I could finally relax and sleep, spending hours reading creepy pasta theories and watching random videos on my tablet, oh and playing games on my 3DS until about 3/4am. After a month though I managed to calm myself down and settle in to my rhythm here. Although my neighbour and carers must have been amused by watching me zooming around to find something to quiet my mind down. Being hyper vigilant can be a drag. 

Til all are one

Wendy xx