Trying new things

Hi all hope you have been having a good few weeks. Things have been nice here, some appointments, some relaxing, some writing (eek) and lots of other small bits of things going on. I thought I would pop on here and have a little first of the month update as to where life is at.

*Spoiler alert – things are OK it is safe to read on!

I saw my consultant a couple of weeks ago and he is happy with how things are progressing (or not more to the point!) with my illness. I am relatively stable in the grand scheme of things, well established with my breathing machines (CPAP and nebulisers) and making good attempts in order to keep infections minimised. That is the main aim for me going forward to reduce the serious infections and pneumonia’s. Or life-threatening pneumonia’s as he refers to them. Scares the shit out of me when he says it (sorry for swearing) but as scary as it sounds, I appreciate the frankness. He tells it as it is in order for his patients to understand the seriousness of this disease, of the importance of managing our treatments and looking after ourselves in order to maintain better control where we possibly can.

He had great news that the TBM operation is finally up and running in the UK and that it’s proving to have good initial results to those that have gone through it. This is great news and for an operation that was perhaps ten years in the future is now maybe five years away instead. It’s not something I will be pushing for yet for many reasons personal to me. Plus, as it is new and still getting established, it is being prioritised for those who are in a more difficult position, for those who are suffering regular life-threatening pneumonia’s regularly (stop saying it, stop saying it!) or who are unable for whatever reason to get on board with the breathing machines (CPAP/ BIPAP) and have no real quality of life. Whatever the future holds for me its comforting to know it’s there as an option should things further deteriorate.

I have also started a new writing course for June. Similar to the April one I did where you get email prompts delivered to your inbox every day in the month to assist in inspiring and getting the creative juices going! I thoroughly enjoyed the April one and was very flattered to have some pieces included in the website anthology that the writer who runs the course selected and set up. Link to my contribution and other pieces below (For those who don’t know my work can be found under Angela McEvoy, my actual real-life name!).

One of the strange things I had to do was write a biographical piece in the third person, about myself, as a writer. This in itself blew my little mind. I can’t believe that I get to do these things. That something pretty great is coming out of something really pretty horrendous.

The pride I have for my writing when I publish a blog, or get nice feedback from one of my pieces, or get my work chosen for a website (WHAT???!!!) is a totally new feeling for me. It’s something I rarely felt to this extent in all the years of paid work. I obviously felt proud if I had done a good job or a productive week, or received some great feedback, but this is different. Much of this comes from my heart, is so personal to my life, and is a vulnerable process putting yourself out there. Being creative and producing something, anything really, is a very new experience for me but I hope that I continue to feel this pride as time goes on.

My other related piece of news relating to this is that I can say with utter excitement that I have started writing a book!!  It has always been a dream of mine to do this but never thought it was something that would actually come to fruition. I didn’t seem to have the drive, the confidence or even any particular story I wanted to tell. Thanks to the April writing course (mentioned above) it seems to have unlocked something in me that has helped me on my way.

One of the prompts in April has set me off developing a fictional story that I feel like I can run with. It could be I get halfway through and it is going nowhere but to be able to start, to feel myself light up with ideas feels nothing short of wonderful. It might take me years, I might never finish it, but I have started and that in itself feels like an enormous achievement after everything I have been through!

This week has definitely been a week of firsts. I also went to the cinema and took my portable breathing machine with me and did my treatment right there in the cinema. IN PUBLIC. I couldn’t work the timings out around my treatment, film times and food times and wanted to do it all. So, I did. I packed my machine, portable battery and off I went.  It was OK. I felt self-conscious for sure, I would have preferred not to have to do it, but needs must and it was one of the most perfect places to do it sat in the dark! Will definitely do it again in the future that’s for sure.

Trying these things, doing new things, pushing myself that bit more just opens up extra parts to the day I feel I have been missing out on these last few years. As I have spoken about numerous times each day is planned timing wise pretty much from the moment I wake up. Its stressful and tiring but at the same time, trying new things, trying out ways to make it work is all good in the long run, whether it works or not because it could just unlock a new activity you thought previously had been closed off for you.

On that note, I will bid you a goodbye and wish you all a lovely week ahead whatever you may be up to. As ever, thanks for reading and until next time…

April Anthology Writing Link:  https://wendysaprilwriteathon.home.blog/

Secret Holidays!

So, the secret we have been keeping for the last 6 months is finally out. Keeping it quiet has been tough going. All of the family minus my brother in law (who had to work) flew to Spain to surprise my Auntie for her 70^th birthday.

Apart from the ‘Take That-ting’ I was carefully saving my spoons, on lock down and trying to keep well and rested. Not blogging about prep, how I was feeling or saying anything on social media was tough. But thank goodness we did it. Her reaction was wonderful and worth every secret email, text message and minute sat on the couch being quiet in preparation.

I have been a bit quiet since we got back catching up on sleep and sorting out my asthma which seemed to take a bit of a dive. All more or less sorted itself out now so I decided to do a little blog about it all. Feels like I have been home for ages and this is a really delayed blog but in reality, I think it’s only ten days since we got home! Anyway, where was I….

Travelling again on a plane, round two of flying post diagnoses was as I remembered. Frustrating, painful, and hard bloody work. Take off and landing in particular hurt as I think the extra force makes it more painful. Not pleasant especially as I am already a scaredy-cat flyer. But I was ready for it and knew what to expect. I took my painkillers, super flying tablets and had my bags packed in a certain way that made the security process easier. Everything done to make it just a bit easier. That seems to be my new motto across life these days.

Despite the wonderful busy trip, being away is hard. Which makes me sound a bit ungrateful. I know I am lucky that I can still fly. It may be in the future I will not be able to. But for now, I have a little routine going, which I am learning and building on. Just to make sure I make things as easy as possible to try and recreate some of the comfort I have at home. This includes LOTS of painkillers, and lots of sleeping whilst away. Anything which effectively saves some spoons. That said, I absolutely loved being away with the family so am not complaining about that!

It just shows the more you travel the more you learn about what you need when you are out of your comfort zone. Never will I swan through the airport again (or anywhere really?!). Its always going to be a tricky and never slick. But each time I travel something else occurs to me that will help next time. It won’t ever be perfect but it will get easier. So, this means I will have to take more trips. Oh well, if I must!

Benalmadena (where we went) is very hilly except for the walkway on the front. This was tough at times for those pushing wheelchairs (sorry guys!) especially as a lot of kerbs, paths and pavements aren’t set up great for wheelchairs. I found myself at times getting hugely frustrated. With being in the chair, with having to rest so much, with missing so much of the day because I was indoors doing treatment and for a range of other things mostly small and inconsequential to others but felt really huge for me.

I am so grateful travel is still an option for me (funds depending). I say that because cheap travel isn’t something available for a range of reasons including hefty travel insurance charges (essential), extra luggage (for all medical/ comfort requirements) and sensible flight times I can work around my treatment.  The fact is if its planned carefully I can go on holiday. It isn’t the same as it was and I will continue to miss pre-illness holidays but I cant expect my whole life to change and just magically adjust without bumps in the road (or the pavement!!)

Nevertheless however, frustrating things get at times or how tired and in pain I feel, I had a lovely break with my family, and I got there (a small selection of pictures below). I say this a lot in various ways. I did it, I got there or I made it through. Because not that long ago many of these things felt impossible. I have to sit back and be thankful for that when the frustrations hit and accept that they will.

We have another trip planned to the sunshine in three months so the countdown has reset and we go again!

Have a great weekend everyone x

 

Spoons!

Well I have been a busy bee. Its been Take That concert season and guys, guess what? I did it! I had the best time. It was very emotional, I was very worried in the run up, that I wouldn’t be able to manage. But I did!

But for those 2 hours of music I felt more like myself than I have in a very long time. I couldn’t dance like I wanted to, but I have a good thing going with my stick now and sat down a lot. But I did it. It was an immense achievement (piccies below of my excited pre-concert face!)

We did have some disasters along the way. My machine decided to break whilst we were in Sheffield on the Friday night. Post-concert, when I needed it the most. The air bit still worked but the humidifier part broke. So I had to make do with cold air blowing air into my lungs. Pretty quickly my lungs dried out. It was agony. But the alternative of missing treatment was not an option.

Of course, it was weekend and the clinic was closed. By the time Monday morning rolled around, I barely had a voice, couldn’t sleep and was in pain. We then had to undertake the 3-hour round trip for a 10-minute appointment. Oof.  It took a good 5 days to get back on track. Just in time for concert number 2!

Now the fun is over I am all about recovery. Sleep, some writing maybe, and definitely more sleep.

In my last blog post I talked about the writing challenge that I have been doing for the month of April. Its been fairly versatile the challenges each day. Could be a word, or a subject or even a video.

One of the pieces I did was around the word prompt for spoons and given that I have had some nice outings recently it felt relevant to share here too to give an insight into what it means to manage your energy levels when you have a long-term illness or are unwell.

Some of you will be familiar with a lot of what is covered in the piece as its things I have touched on this subject before. As time goes on I have become better with saving spoons, listen to my body, and rest as much as possible.

This piece was called Saving Spoons:

20 months ago, a spoon would be to stir a cooking pan, to eat my food or to drip feed information. I had to do that a lot in my job. Pass on information, knowledge transfer, a bit of training. It was all part of my busy daily role. Busy busy life, busy busy wife. I had the odd bursts of bad health along the way and had a pair of naughty lungs who liked to misbehave.

Then overnight my health broke down and suddenly a spoon was no longer all of those things it was before. It became a metaphor for my life. For my energy and what I could cope with in a day. I could no longer work, walk anywhere or some days function at all. I was reliant on breathing machines and staying away from any germs so as not to get sicker.

My first thought of the morning now on waking is; what can I cope with today? How many spoons are available to me? Some days I am rewarded with a manageable amount, some days very few.

Life isn’t spontaneous anymore. I even have to plan when I wash. I can’t suddenly decide for a day out. I have to plan my breathing treatments, what food I can manage to prepare and even what I need that day from upstairs so I don’t needlessly have to re-climb the stairs again until bedtime. Its hard work. It takes up a lot of space in your head, it’s confusing, tiring, upsetting and I’m fairly sure the planning of the spoons uses spoons itself. Irony.

Some days I can manage more and if my spoon gods are looking down on me, I actually get to follow through with plans I have made. To go from a busy person, social, to managing spoons was a shock. It’s still a shock now. Some days I have more spoons than others. Some days I have no warning and suddenly there are none left. I crash in the most awful way and quite literally have to be put to bed. Aged 41. Like a child who ran around on a sugar high and falls asleep where they stop.

So meticulous spoon management it is. I plan them as carefully as I did my projects at work. Showers, allowing me enough of those spoons to dry my hair. Not even to get out of the house. Just to get out of the shower. Just to dry my hair. Sat on the bed obviously, always saving spoons.  I have to use a wheelchair if I want to go further afield, or drive somewhere and be parked directly outside. Don’t be wasteful!

There won’t be a time in my life where I don’t need to manage spoons. Some days they are my friends and some days my foe. I resent them and revere them in equal measure. I have learned the shortcuts to doing things to conserve as much ‘spoon-age’ as possible and continue to learn almost daily.

What I do know though, is that without that management, that analogy, that knowledge of what my body needs I would find it virtually impossible to any kind of a thing. I guess in some ways I need to be thankful for those pesky spoons.

Thanks for reading everyone. Speak soon…. x