Never Ending January…..

January has lasted for seven years. I am sure of it. How is it not over yet? Christmas and New Year feel like forever ago. Will it EVER end?!

It’s been a very gentle start to the year for me which is just what I wanted. I have been saving energy, sleeping and building myself back up. I have watched lots of TV, films, movies, completed a good amount of candy crush and had a good online shop (without checking out of course). It is January after all.

I have continued to struggle to come up with ideas and inspiration to write my blog. I have wanted to, with all my heart. I love posting an update, love getting out there all my latest issues, thoughts and feelings down on paper (well screen!) but I haven’t been able to pave a way through to say anything or produce anything. I have taken this as a positive. Maybe the nature of the blog is changing along with my life. This is after all my 21^st published blog post! At one point I didn’t think that I could achieve one. I can’t believe how far I have travelled in such a short space of time with the blog but also in myself. Turns out I was down but I was never out. Even if some days it felt very much like it.

All the jobs I had in mind to be done by the end of this month are about 25% complete but that’s not bad. At least I have done some! They aren’t urgent or pressing they just need to be done at some point. My life has not got the same sense of urgency these days. It’s definitely an adjustment but one I am almost used to now.

I think that’s one of the reasons I don’t drink as much these days. Less stress in my day to day life!! For sure, all of this is hugely stressful overall and I have terrible anxiety some days, sometimes for no reason, sometimes because my breathing is off or I feel vulnerable, scared and frustrated but I think the daily day to day stress is less. Despite all of these machines, equipment and medication keeping me alive! Feels like a strange thing to acknowledge.

I sometimes worry the more tired and solitary I am, the more I relax into this lifestyle the harder it is to be motivated to do things and I will get too used to it. That I don’t get lazy both mentally and physically. Certainly, I can’t go on a big walk or run around or do anything of that ilk but I need to make sure I move around as much as I can physically tolerate. It worries me but by being conscious of it hopefully means I won’t let it happen.

Someone asked me the other day how I was doing and how I was coping. Despite the pneumonia and getting over that, I am so tired which is a struggle, I feel OK with it all. Yes, I continue to be frustrated and fed up and feel isolated and bored at times but the regimen and the routine of the treatment feels more natural. I am just getting on with it and have no strong feelings either way (good or bad). I am just thankful for it helping me continue to breathe and get over these nasty infections and virus’.

I have bought a new bed which comes next week. We have had to go for an adjustable bed because I am now sleeping so propped up that it’s having a bad effect on my back, neck and hips. This one properly raises me up whilst supporting the body properly. Its fancy fancy and so comfortable. Another of those mental hurdles to get over having to have a bed like this. But if it means my body is more supported, I am more comfortable and the hubs gets a bit more room back in the bed as currently he has to sleep around my mountainous pile of pillows, then its a winner all round.

I had a great appointment with the extensive care team last week who are going to look to find ways to help my illness, make things a bit easier and already have come up with some good positive ideas and things I can do. They can’t get rid of this disease and they openly admit it but they want to make my life smoother and help me build up, grow in strength to help me fight it all and stay as well as possible. I feel really positive about it and so thankful to the nurse practitioner at my doctor’s surgery who thought to recommend and refer me.

Rock and roll my life may not be currently, but I am all for an easy time of it these days. I am happy with this peace, quiet and gently gently start to the year. Now if January would like to hurry up and do one we can all get into seeing what February 2019 has to offer.

 

Its all about balance…

So, I woke up Monday morning and thought what am I going to do with myself today. Not what can I manage, I’m sad or in pain but what can I do this morning?

It took a chat with my mum and dad to realise that this isn’t actually a bad thing. I am not sad by waking up on a Monday and not being at work. Something has shifted and my first thought wasn’t about a negative emotion it wasn’t about how things have changed, feeling sad, needing to conserve energy. It was that I wanted to do something and wanted to get out and about. What a lovely change!

So, puppy, Rosie (the new walker) and my dad and I we all went for a little walk. It was nice and sunny and so was my mood. The fog is lifting.

I have had a busy time of late with extensions, and dealing with leaks and annoying window people but have also thankfully started to being a bit more social in the daytime around my treatment. All of this has started to change how I feel about everything. Sometimes it takes someone to stop and remind you that things have changed to see the very small positive shift in your life and your thinking.

I think something happened after I published my last blog. I am not sure if it was because I managed to finally get out how I was feeling into words, or the sheer act of publishing my blog but my mindset shifted again. For the better.

It feels like with every little achievement, and every new thing I challenge myself to do I feel such pride at even the smallest of things. I am not giving in to this. I have not been able to walk out from my mum and dads house since I got so poorly over 18 months ago and today with the help of Rosie and dad I did it. I didn’t notice or realise the milestone until it was over. It felt so good and I felt so proud. I am enjoying being able to use my legs just a little bit and enjoying some winter sunshine even if it is with a walker. I can’t get far but it’s about gaining a touch more freedom and independence which is always going to be good for the soul.

As my lovely friend who I met for coffee last week told me that perhaps publishing ‘Project Ange’ blog was a cathartic experience and would help me to move a few steps forward. She was right.

I have also started to think about this whole Project Ange thing and what it means. First step is my brain, I need to get it firing again. I definitely want to do more writing, not just this blog but in other areas too, just for me because I enjoy it so much, so I am starting to explore what is possible for me around this illness.

I need to be reading more books and get my brain working again, fire it up with some good reads (all recommendations accepted except horror stories – can’t cope with the nightmares!). Reading gives me such personal joy that I need to prioritise it (over watching Friends and Grey’s Anatomy on loop!). I think eventually I might do something a bit more academic but for now nothing with any pressure or deadlines is working for me.

Other than getting the brain working and small walks on the days my body will allow, is the challenge of weight loss. It’s very slow and steady wins the race as my body is pretty much ravaged by steroids from the last 15 years. I am taking my time. I will get there. I am almost at a stone and a half down now and much more to go but I am finding out how to balance losing weight, being social and sticking to what I need to do to keep me well.

It’s all about balance and this is going to be the case moving forward in all aspects of my life and working towards finding that balance will always be the challenge.

Following my OK day on Monday, I was hit with a bad asthma attack and airway collapse on Monday overnight. I’ve been very tired, in a world of pain and resting up since then. All plans and life put on hold. It has been hard but I knew it was due so wasn’t a shock. Long term illness doesn’t allow you to get cocky. It pops up and reminds you that your life can only be planned to a certain extent and nothing can be taken for granted.

This isn’t an illness that will improve. The only things I can improve is my reaction to them. Understanding my limits (always changing) and reacting the right way when this happens. So, all plans were cancelled, I have been sleeping lots and I am currently best mates with my packet of painkillers. It’s a temporary blip and for the first time I haven’t panicked, am leaning into the skid and just going with it and laying low! It doesn’t feel like the end of the world where once it previously has done so I am clocking that down to a win!

Until next time….

Am I a shadow……

Some days I feel like a shadow of my former self. Like I can’t remember who I was, what I was like and what life was like before breathing machines, medical retirement and all this upset and pain. Before I even knew the word Tracheabronchomalasia. It’s hard to explain. I am the same person yet I feel inherently different. The old me will never come back, not fully.

My life is so very quiet. Some days I feel lost amid all this. Where is that loud laughing, confident, independent, dancing queen? At what point was she lost? I am wracked with this feeling that I am so bloody boring. Some days I struggle to talk about anything other than my illness, how I feel and that I have so little to talk about, to contribute. I don’t feel interesting and that I am now rolling through life with little to do or say.

My world is smaller, I see less people, I do less things and I have less going on. I watch TV, I am on treatment for hours a day, I read, I am solitary. I feel solitary. Some days I feel so lost within myself. Of course, I see people and the greatest pleasures of my week are seeing my family, friends and getting out into the fresh air but inherently I feel lost. I am lonely. This illness makes me lonely and I don’t know many people who can relate to this. And I wouldn’t want many people to be able to relate. I wouldn’t wish this feeling on anyone and I don’t want anyone to feel sorry for me either. I also believe this is such a common feeling, for those suffering any kind of illness.

There are few people close to me who understand what living with a long-term illness does to a person. The isolation of it all. You watch everyone else getting on with life, having amazing experiences and living.  How do you explain how you feel? Even to those closest to you. That some days the fight feels too hard, too much and that you can’t see how you can possibly carry on one more day (but you do). That other days its only there in the background, you can ignore it for long enough to have a nice time, enjoy a few hours. Laugh, smile and enjoy, but it’s always there knocking on the door, reminding you. It is relentless.

I have an amazing support system. I wonder what those who don’t, how they cope with it. I can talk to everyone close in my life about everything. Things feel brighter on those days. The smallest of things feel the most important now and I am so thankful for all those people who pause their busy lives, despite everything going on with them and listen to me and do their best to dry my many tears. Some days I don’t even know why my eyes are leaking so much.

I am grieving. Except no one died. It is a long journey, a cycle of dealing with everything that is new, that has changed and that has passed. The dreams and achievements I had in mind for myself. The life I wanted with my husband, the life I wanted for us. It just all stopped. Yes, there will be new dreams, new wants, that’s how we evolve. Some days that emotion overwhelms me, that comes in waves. Some days its OK. I can get on with it and deal with it. I can distract myself enough to let it pass. Some days it excruciating.

In time my body might not get better but my mind will, I just need to be patient and learn to find ways to distract myself. I need to start putting into practice the things I want to do within my new limits. More writing, learning, reading and getting out a bit more independently. I need to do the things that have been sat on my list for months on end and start achieving that little bit more.

Those are the things that are going to get me through each week, each bad day or bad period. Little pockets of positivity that will enable me to feel more ‘me’ again. It’s just finding the motivation, without stressing myself out feeling there is too much to do. Its out there and until I try then I won’t know.

So, to try and be more positive (the end goal with all of these blogs as I don’t want to be a total miso!) Perhaps I am not a shadow, perhaps I am closer to who I was always meant to be and all that’s happened is that through this illness I have been forced to strip all the noise back to my core of who I am. Now the rebuild, the restoration needs to begin. I am my own ‘Grand Designs’ and accept at times there will be a problem in the build, the budget will be at breaking point, I will be tired and weary and motivation will be at an all-time low. But eventually I will get it done, get back to finding who I am and feeling more myself. I am Project Ange.

 

Occupation = Hospital Attendee

These hospital appointments, they are like a part time job in itself as I am sure many in the TBM community, or those with medical difficulties can relate. Plus, the cost of coffee when you go so much. Hospital appointment equal Costa Coffee. That’s the rule, right?

The people I see at my various appointments are amazing and I am in awe of the knowledge they have and the care they give their patients. At any of my specialists or specific respiratory appointments I have never felt that they haven’t got time for me. I hope this is the case for most people and its not just because I am so ‘unique’. Their words, not mine.

The funny thing is now with these appointments is that you are ticking along, or not, sometimes you are struggling along. You have your various GP appointments to deal with the day to day stuff. The infections, and pains (that’s the main reason I go to my GP anyway), and then you see your specialist and respiratory team for an update and review of where you are at.

These appointments are so massively helpful. They are finding things out all the time, and working behind the scenes to understand your condition, treatments and new and better ways to treat you.

As a side note, the NHS is amazing. I can’t and won’t stop having enough good things to say about it. It has after all saved my life (not to be too dramatic) on a number of occasions and yes, they struggle and are woefully underfunded (cheers for that Theresa, Dave and co.) but the people that work there (for the most part) are actually amazing and every day heroes. For the work they do, the hours they put in, striving to make their patients well or at least better. Amazing.

As per usual I have digressed from my point. So, you get to these appointments and as I said I am hugely lucky to have such good and enthusiastic people taking care of my health and well being. The hard thing is when you are ticking along dealing with the everyday, day to day activities related to your health and with mine it’s a lot. Nebulisers, 10 hours plus overnight/ in the day of my breathing machine, inhalers, tablets and more besides you focus on that rather than on the overall of it all.

These appointments bring everything back into sharp focus and whilst I always leave with a positive feeling about my experience this often very quickly moves to being scared. The enormity of what I am dealing with and the sheer scale of what is going on is absolutely terrifying and I’m not afraid to admit it. I always get very tearful and down as I think about what is going on and what the future may hold for me, the hubs and my family. I have so many of these appointments now that I know how I am going to feel and am ready for it but the feeling you get of how frightening this is all to face never gets easier or goes away.

I know most people think about the future and for some it may be exciting and for others it feels scary and some maybe don’t just think about it at all. I am often reminded though, at these appointments, that the likelihood is that things are going to get worse. That this isn’t it, that this is in some ways perhaps only just starting or is maybe 40% of the way through the journey. That at some point things will get even more difficult than they are now. I can’t even imagine. We just don’t know when or how bad it will get. The optimist in me (buried deep but its still there), knows it could be years yet. But then the glass half empty side (usually on the winning team) thinks it could be around the corner. To say I am shit scared on a regular basis is a massive understatement.

So, I allow myself half a day, sometimes a day, to allow myself to dwell, be scared and acknowledge the feelings and then force myself to become distracted again by the everyday medical routine and move on from it. You can’t live in that state of panic long term otherwise more than your physical health will suffer and I feel very determined I don’t want to go down that road.

On the plus side of today’s appointment has shown me that I am a lot better than I was months ago when I last saw my respiratory nurse as physically in myself I am stronger. I’m also a stone lighter and with every stone that goes, I am putting less pressure on my lungs and heart which can only bring good things (and less pain perhaps too) – ever hopeful!.

I think that’s all from me today. I am off to watch some TV (Handmaid’s tail, OMG have you seen it? SO good!!!) and cuddle the puppy until she has distracted me enough and I feel a bit better.

Until next time….. xx

Tell me why I don’t like Monday..

So, Monday morning descends as it always does and so does this feeling that I can’t shake. It’s a weird one, when I was working I hated Mondays. Like HATED it. As much as whistling, bullies and Mel B (soz about me, I just can’t stick her!)

That whole back to the grind, early alarm, what’s the week got in store, five days at work to get through, plus being so inexplicably shattered all the time. I felt like I needed to rest from the weekend before I could start work. I understand now that was my illness starting to make itself known but a lot of it was just that I hated Mondays.

As much as I hated Monday though I enjoyed the routine of work, the company, the sense of achievement and like I was contributing to something each day. To get up and go to work gives you a sense of purpose. I always wake up on a Monday with this strange empty feeling that things aren’t quite right, that I am missing something. I guess its years and years of working. I miss the routine of it all, and the routine of hating Monday!!

Everyone my age generally trots off to work, or it could be its their day off and they go about their tasks and jobs for the week. I feel like the first hour of a Monday morning is a real test for me. To try to stay positive and fight the urge to just sink into the sadness.

Not working, when I was working sounded like the dream. I guess its different when its not your choice and it’s the only option. Often those that retire have done all they can, or all they want to in their careers. They have geared up to the retirement, counted down the days, have big plans and enjoy the act of finishing. It is something that is celebrated, cheered on then its off to live a nice relaxed next phase of your life. They are in control of it.

For me it was vastly different. I went off sick, unexpectedly. I was only meant to have an investigative procedure and then that was it. I never went back. It was a super sized snowball effect from that point. I was terrified before the procedure, abnormally so. I always wonder if a part of me somewhere sensed what was coming. I often try to remember my last official day at work in the office. I wonder how I would have felt if I had known it was the ‘last day’, done anything differently, enjoyed it more? Unlikely. I was knee deep in a project at the time and it was hard going!

My consultant told me very early on I wouldn’t be able to work again. I didn’t want to hear it. I had got better time and time before, surely, I was going to be alright again, it would just take some time. I could work part time or I could work split shifts around my treatment. After all, I had pneumonia in both lungs, across the lungs in various patches, that’s always going to take time to get over that. I felt like I knew best.

I think the realisation hit December last year. I had been off for 5 months (felt like 5 years) and was improved from the pneumonia, still weak, but better. I had started my breathing machine treatment in the months before and was up to the required hours but there was no magic improvement. In fact I had plateaued.

That feeling, when it hit, that things were never going to be the same again and that a working life was no longer an option for me was like nothing I can or will be ever able to describe. My whole life had blown up.  Everything I had worked for, all the studying, the long hours, busting myself to get opportunities, experiences, training and most importantly the times I pushed and pushed myself to do a good job all halted and stopped. Do not pass go. Do not collect £200 (or a salary as it would turn out).

The fact of the matter is Monday mornings still remind me of those going to work feelings, experiences and I guess in some ways the sense of loss of that stage of my life. I am sure one day it will become nostalgia and I will no longer feel sad about it. These days I always make a conscious effort to do something nice on a Monday. Book a visit or coffee with a friend, see mum and dad, or puppy and I will nip out somewhere and do something with my day. Today I am writing this, this is my something nice to do today.

The week ahead feels long on a Monday so its time to strap on those positive pants and look to the week ahead. Have a good one peeps!