Hello Spring!

Here we are the winter is finally receding and spring is on its way.  In truth this blog started as a happy new year and then it got too late to post. So, I’ve mashed it up a bit and it’s all about what I’ve been up to!

It has been a while. I know I say that every time. Life has been a bit of a ride since my last post. In it I mentioned that we were moving house. We did move house eventually, but not where we originally wanted.  All I will say is always get the good survey done! We were thankful we did. Not to dwell on it too much (I am a big believer in meant to be) we found another house and are in and after a long six months we are finally settled.  

We moved early September and then a week later went on our much needed long planned for holiday abroad, our first since covid hit. We did very little except eat nice food and lie on sunbeds. We came home energised and ready to tackle the sheer mountain of unpacked boxes we had waiting for us. Sadly, it was not to be and we both had caught Covid on the flight home, thus beginning the winter of illness!!

Covid was not kind to either of us. I struggled as it went on my chest immediately (thanks TBM) and was awful.  I had weeks of antibiotics, steroids and antivirals and it was still one of the worst ‘chest things’ I have experienced. I am so thankful for the time I spent hibernating/ shielding as I was in a bad way even after 4 jabs and some antivirals.  I am doing my utmost to avoid it again although its not that easy I know. Its certainly here to stay and trying to live with it when you know how poorly it could potentially make you is tough.

We just got sorted post Covid and were making some progress in the house and bam… hideous winter cough and cold/ flu descended. SIX WEEKS, yep, six, it took me to get rid of. I’m not actually sure how many antibiotics and steroids it took in the end but it was a lot! I was absolutely exhausted with coughing, with the amount of medication and inhalers I needed and the sheer effort of doing anything; including getting up the stairs to bed or getting a drink. Anything was too much. It floored my family too with everyone feeling the effects badly particularly my poor dad who ended up in hospital with pneumonia just before Christmas. Thankfully he was home for Christmas and well on the mend now.

We have had our fair share of issues with the house (understatement) during that time which in all honestly, we maybe naively, were not anticipating! Broken boilers, garage flooding, ruined furniture from said leaky flooding, new dishwashers and washing machines and then replacement parts of smashed washing machines (arghh), the list was (is) endless! It took its toll at the time though and we did wonder at one point if the house was cursed! I think now it was just a case of bad luck and bad timing, not helped by feeling rotten ourselves.

My only new year resolution is to continue to try to make the best decisions for my health so I can enjoy life. So far, it’s been going well. Meeting up with friends old and new, reading an array of books. Family time, getting out and about with our gorgeous dog on little trips in my wheelchair. All of these are the things currently keeping my ‘jar’ filled up.

I have found it hard committing to a published post I think because of that naughty voice in my head who says ‘who cares’. But out of the blue I got a very kind reminder of why I started this blog in the first place. A friend who also struggles with TBM reached out and said my blog was helping her with information about the condition, currently more than any of the doctors or specialists supposed to be helping her. It was a nice moment and made me realise that as much as this is for me, I started this blog in the hope that if I helped just one person feel less alone post TBM diagnosis it would be worth it. I can’t thank her enough for giving me that reminder I sorely needed.  

It’s nice to be back.  See you soon!!

Freaky Friday..

It’s been Freaky Friday in our house these last few weeks. The hubby has been poorly with a bad chest infection which they think had developed into a mild pneumonia. Every time he moved, he was out of breath and couldn’t do anything except sleep. Talk about turning of the tables!

It certainly gave me insight to what he does when I am poorly, all the support he gives me that I sometimes don’t even notice. He has been wiped out, no energy and out of breath. I really struggled to do more than I am normally able to do so we just had to let some of the domestic balls drop and accept help where we could find it.

It gave us both a better view from the other side. Neither of us liked it. Not that we particularly like the way it is when life is ‘normal’. I feel so frustrated I cannot pick up the things he does for me. That I cannot do the things others that are fit and healthy can do. It’s tough, it’s left me feeling drained. Physically and emotionally. There have been a lot of tears (mine) and a lot of naps! Thankfully things are improving and life is returning to normal.

Because of all the going on, January has gone by in a blur. I didn’t notice it! It was a haze of sleep, greys anatomy on TV and keeping a side eye on all thing’s coronavirus.

Is that a worry or what?! For most people the virus wont cause much of an issue or even be a problem. It is mainly the media whipping everything into a frenzy. For those of us with lowered immune systems and already difficult respiratory illness it’s just an additional thing to worry about. We catch cold and coughs with ease as it is. But, trying to not panic and blow things out of proportion in my mind.

I will have to start wearing my mask more when I am out and about if it does spread as they are expecting and continue with the usual; gloves, anti-bac, wipes, the lot. It’s a worry for sure but at this point I am still trying to keep it in perspective.

It is getting close to my birthday now and am trying to focus on that. I like to celebrate a lot so plenty of plans afoot!! Unfortunately, I have my repeat bronchoscopy the day after my birthday in Manchester so plans are being worked around that.

I feel very emotional about it ALL, mostly because I was so poorly with pneumonia after the last scope and it signified the start of ‘everything’. The diagnosis, the decline and what felt like the start of all my issues. That is without taking into account the actual procedure, the collapse of the airway and the flushing out the lungs. All in all, it is no wonder I am feeling anxious. I am just hoping that I cope with it physically better this time, that the current treatment regime I am on prevent it happening the same way again and there hasn’t been much further collapse of my airways. Not that I have much further to go!

Just trying to enjoy my plans over the next week and try not to think too deeply about it. I think that’s all from me, will update post scope with all things good news hopefully!

Until next time….

Unplug……

I have been debating this for a while but I think it’s time for a little social media unplug for me. There have been a few things of late that have caused me to realise I spend too much time head down on my phone. I spend hours looking into everyone else’s lives or reading rubbish, watching videos or shopping online for things I do not need!! I want to get out of the habit of reaching for my phone when I am bored.

Some days I feel that I am living my life through others and some days this makes me feel worse not better. Of course, it makes me happy seeing what people are up to but sometimes it also makes me sad. The realisation of what I am missing out on and feeling not quite enough in myself because of the illness, and knock on impact of this.

I am getting drawn into things I don’t want to be involved in, and getting cross at things that shouldn’t be on my radar. It is all of my own making. No one is making me pick up my phone but it is a habit and I sorely need to break it.

As an experiment this week I set a time limit on my social media and much to my dismay was reaching it by lunchtime.  The internet is great for a lot of things but because I spend so much of my time sitting around doing treatment it is easy to just pick up the phone and pass the time.

So, I have taken the decision to break the cycle, go cold turkey and start investing my time in things that will make me feel better. There is nothing wrong with the odd dip into social media, but my usage had tipped beyond that. I was looking at other people’s lives rather than investing in my own. I had slowed down with my reading, writing and even doing the small jobs I can do, to just sit and stare and it hasn’t been making me happy.

As someone who has been given the gift of time to literally sit still for 3 hours plus hooked up to a machine every day (see I am putting a positive spin on it), I want to try and use it in a better way.

Social media chat aside I have had a quiet time of late. I have been battling with overwhelming tiredness and haven’t been able to quite pull myself together. As a result, I have had to press pause on a lot of other stuff whilst I have rested.

I haven’t felt unwell just massively weary and sleeping much more. Which is quite an achievement given how much I sleep anyway. Thankfully, I seem to be coming out the other side of it and although there have been no other symptoms I wonder if I was just fighting something off which I seem to have been able to do (touch wood!).

As a result of the tiredness and knock on effect this had on me physically, I’m re-focusing on my overall well-being and building my strength. What I eat, to fuel my body correctly but not overeating, but also keeping my energy levels up. It’s a fine balance, and I have not got to grips with it yet but I am trying to be make better decisions in the hope it will help overall.

I have learned to listen to my body in terms of spoon/ energy level management so this is my next focus. I have sourced some more holistic treatments that can potentially help with symptoms and effects of this illness and will of course report back on anything I find of use!

We have a big family holiday booked in a few weeks and I cannot wait to get off that plane and feel the sunshine hit my face. A week of relaxing and spending time with loved ones. This unplugging is coming at a good time. I want to spend my time focusing on making memories we can all reminisce about for years to come!

I will bid you a farewell for this instalment, a few days following this blog being published I will be going cold turkey!! Not sure how long it will be for, might be a month or more, might only be a few weeks. Rest assured I will be back all guns blazing and hopefully feeling re-energised.

As ever, thanks for reading and support and until next time……

Whirlwind….

Ooof, well that has been a whirlwind. I do enjoy celebrating my birthday! I had a whale of a time and this naughty illness didn’t hold me up too much.

Yes, I had to keep stopping and doing treatment and it cost a fortune in parking and hotels, and I did pack more pillows to take with me than I think Dunelm has in stock, but oh my it was fun.

There was points though when I was sat in the gorgeous restaurant having lunch drinking wine with my hubs that I almost forgot about all the rubbish stuff. I was happy, slightly tipsy and enjoying myself too much to notice anything else. Yes, it sucked having to be in the chair, having to go back to the hotel and do treatment instead of carrying on drinking, shopping and eating yummy food like we would have once done, but it was so worth it. We  had a wonderful time from start to finish and I have continued to socialise on and off since then at a more respectable speed.

Thankfully I got through the rest of birthday week with some good resting, some nice outings and gentle celebrating. I didn’t want to push my luck. I don’t know if I am finally getting the hand of balancing my energy levels and listening to how my body feels or I just got sheer bloody birthday lucky.

Pain wise things are improving for now, I have been having acupuncture on my neck which has helped enormously and will continue to have some more sessions to try and sort out my neck and back once and for all.

Because I am so inactive and struggle so much to do any kind of exercise my spine is starting to suffer. There is no damage as such, it’s just weaker than it should be which is why any kind of crazy cough or airway collapse is resulting in me hurting myself. I have exercises I can do to try to stretch it and will need regular acupuncture to keep on top of it.

In other news though I do now own the most comfortable bed on the planet. I am so comfortable and supported in the night during sleep that I am having less pain in my chest in the day which is a win. I am also suffering a bit less in the middle of the night with pain, coughing and am sleeping marvellously. It was very expensive but it is already proving its weight in gold.

Plans for the coming weeks are a bit more minimal. Plenty of resting up and recovering. The brief spell of sunshine last week was a literal gift from the gods. Puppy and I enjoyed little sun-drenched snoozes in the Jason (Orangery). Its amazing what a little bit of a reminder of what life could be like and what benefit the feel of the sun on your face brings. I, much like everyone else I assume, didn’t want it to end and return to chilly days and big coats! Whatever though, this is the sign of things to come and I for one can’t wait for winter cold and flu season to be gone and spring to be sprung!

Other than that, it’s been one appointment after another. I am still seeing the extensive care team. Unfortunately, I have been struggling with being dizzy again. We think we are getting to the bottom of it now. Turns out when I threw my neck out I have potentially managed to perforate my ear drum (not as painful as it sounds) but could be the source of the lightheaded-ness. The alternative is that it’s my TBM and that I am having trouble with maintaining oxygen levels moving around. That sounds more frightening though so for now everything crossed its the ears not the lungs.

I have been thinking a lot about future blogs and have in my mind a few quite specific to the illness and things that I do now to help make my life that little bit easier. I appreciate this might not be very interesting or relate to everyone but think it’s important to share what I have found helps (and what doesn’t!).

I was reminded this week with a lovely message from a newly diagnosed lady saying how much reading my blog had helped her, so decided it was time to share some of the things I do in my day to day life that helps and the tools I use to make my life just that little bit more manageable.

Have a great week everyone. Speak (write?) soon ….

 

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.

 

So long 2018….

Well I cannot say goodbye to 2018 quick enough, in short, you have been an absolute pig.

Illness, retirement, slow rebuild and then right slap bang as I was beginning to build strength and piecing things back together, the pneumonia hit. I was back in hospital and feeling like I had gone backwards. Maybe not square one but certainly square three! I am leaving this year behind no looking back. It has been too painful and at this moment in time I feel a bit broken by it all.

There is a lot to look forward to in 2019 so I am putting this out there, I want peace and quiet, some nice days/ nights and doing nice things with the people I love. I am ready for a break from the stress and worry and upset this illness with it’s never ending surprises brings. To feel not so different all the time, nor so sad or lost.

It hasn’t been all sadness. There have been some pockets of happiness, holidays with the family in the lakes, time spent with my friends, acquiring our beautiful puppy (picture below) who has brought me absolute joy on days where I thought there was none.

We took our first abroad holiday post illness and although there were some challenges, the feeling the sunshine on our faces was worth the hard work getting there. It has also helped us plan for future holidays now too. The travel bucket list is growing.

The starting of this blog has given me such a purpose. The relief of writing, of honestly putting out there how I feel, what I have gone and am going through, has helped me start to heal. The response and support from people reading it, providing feedback and telling me their stories has filled me with such a warm feeling.

We have a new room in our house, our Jason Orangery, which brought lots of stress in the making but we are now reaping the benefits of. We may have located one of the comfiest sofas in history for it and I am so looking forward to the warmer weather, to throw open the doors and be able to live outside inside.

I managed to make it to see Captain Gary Barlow not once but twice in concert when he was in Blackpool. I even got a happy birthday message direct from him. Not sure I have ever or will ever make that noise again! How Lee kept the car on the road when I read it is a miracle!

My 40^th birthday was just lovely, New York was the original plan, but it was not to be. Instead I was spoilt rotten with meals out, afternoon teas, family parties and surprise trips to Harry Potter Studios. To say I felt totally wrapped up in love was an understatement.

I re-joined slimming world for the billionth time but steadily and slowly began losing weight again. The better food, eating well, concentrating on what I was eating, cutting down on the drinking has definitely helped me to start to feel better in myself.

I gained a touch more independence with Rosie the Rollator. I didn’t get to use her for long until I got poorly again but when the time is right and I am strong enough, I will get to use her again. Soon hopefully.

I have struggled to remember the good this year so next year I am starting a journal. When nice things happen or I have positive thoughts, experiences, feelings, I am going to record them. Daily. I have found the dark days a struggle this year and hope that doing that will remind me of the light more.

I thought I would never get over having to give up work, my career and the life I had. But slowly it is coming together. A small day to day routine, working on more positive thinking and enjoying the happy moments when they arise. I won’t reflect fondly on 2018 but there is always hope for the coming year.

It has been a challenge, a learning curve, it was devastating and hard. At times it was cruel and I wasn’t sure how I was going to make it through. It seemed like one set back after another. Well I’ve had all the setbacks I need or want. I’m ready for some step forwards.

So, I am stepping into 2019 with my heart, mind and arms open and ask it to treat me a little more gently than its previous counterpart.

See you on the other side and as ever the warmest of thanks from me for reading and continuing to follow my journey.

Wishing you the happiest of starts to the new year and hope it brings you all you wish for.

 

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.

 

Feeling a bit emosh…

Every time I write I blog it feels like a really emotional experience. Yes, it’s personal and some of the subject matter is difficult but it’s more than that.

It doesn’t feel an effort writing about any of the things I am putting in my blog. I am trying the approach of being as open as possible because that’s the kind of person I always was. I just kept things quiet as I was going through it all last year because I needed to deal with it myself and come to terms with everything before sharing what I had gone through. If I had written this six months ago it would have been nothing short of shambolic.

Its emotional in so many ways. The relief of writing something out, achieving something for my week. When I started my blog I didn’t really have a set time of when or what I wanted to write. I don’t really plan it or think too much ahead. Once I started it felt natural for once a week to put a little bit of my life out there. It may become more, or less than that but it seemed like a nice bookmark to the weeks as I progress through the year.

When your life changes for whatever reason, it changes how you approach things. I have very little confidence in who I am, what I am capable off these days. Even the simplest of things some days are inexplicably a challenge. It could be going out somewhere on my own, making a phone call, even cleaning up the pots. For some reason, some days it all just feels too difficult.  As a result of that, all that you are capable of (outside fighting your illness – I kick ass at that!) comes into question. All I can think is that having gone through what you do reduces you down, when your life is stripped back it makes you feel vulnerable and you have to go through a process to build yourself back up.

On that note, I have found it very difficult to commit to pressing the publish and share buttons on my blog over the last few weeks. I read it over and over, make the hubby read it and make sure he is honest if its rubbish or if something doesn’t make sense.

Then there are the voices in your head that like to cling on to the areas of doubt. They start up with the; who is going to want to read it, people might think ‘so what’, or think I’m attention seeking or that generally that it’s just a bit shit! I am the queen of the over thinkers. I mean I always was but had a lot more to fill my head then. I feel very sensitive to reactions now and feel uncomfortable presenting my life out there for people to see.

I really need to give my head a wobble. This blog was for me and for no one else I think I just need to remind myself of that. That said the reaction from people who have read it and are supporting me with this has been unbelievable. Far beyond my expectations. Someone giving me a like, or a thumbs up, or a nice comment helps me think that maybe I’m doing alright with it. A wee bit needy maybe but sometimes its not a bad thing to acknowledge that you need the support and find it helpful.

I never felt I was creative. I would always say that I don’t have a creative bone in my body. I don’t paint, I can barely colour in between the lines and doing any kind of sewing or making of crafts. Just no to all of that. But somehow thanks (not really thanks, but you know what I mean) to all this, I seem to now be able to create this little blog which is providing me with such pride and a little dose of weekly confidence. Marvellous.

Now I’m off to obsess and question if this is good enough to publish on line!!

Its a bad week not a bad life…

I have really struggled with any kind of positivity this week. I have felt low and sad about all sorts of things. I guess this is all par for the course.

A visit to the theatre and then a meal and a few drinks out the next night left me worn out and with the obligatory sore throat which has got worse as the week has gone on. So that’s me, current position: sore throat, burning cough in upper chest. Nice meaty cough. Think we are T minus 24 hours on a visit to the docs and commencement of antibiotics. Deep joy.

I’ve not done a lot this week due to not feeling good. Have struggled to eat well, I just want crappy snack food (I have resisted as much as possible), my body has felt weary and so has my mind. I have felt very stressed with lots of things. Things that any other week wouldn’t have bothered me.

It’s amazing when you are physically feeling below par that everything else follows and wants in on the action. Especially the brain. It wants to also be allowed to feel low and let itself wallow alongside my body.

It’s not so much about things I’ve lost these days its dealing with the impact of the change. Dealing with a social life (a different blog topic for sure) and how difficult everything feels just leaving the house. Even watching the village gala and it rains. I’m in a wheelchair. I can’t walk up the very slight incline to our house to get brollies and waterproofs. Its frustrating and hard although ended up being very amusing sat in my lovely bestie’s mums front room drinking wine with her fab family and my godsons. So not all bad hey?!

I’ve struggled the most this week with the impact on others. Namely my husband and family. They are the ones that shoulder the care and the burden (my words definitely not theirs) of not just helping me on the bad days but guiding me through my myriad of symptoms, worries and concerns.

The impact this has had on them makes me so sad. Mum and Dad should be enjoying their retirement, not having to feel like they need to check in on me, help me with housework or base their week on when they need to see me particularly if I am feeling poorly. I don’t want that. Not for them.

That I can’t steal away my beautiful niece and nephew for the day and night and go off on an adventure or fun day out with them. That I am so stuck to what I can do and cope with is really hard. It makes my heart ache that soon they will be older and the memories of their recent childhood won’t have been lots of fun days out with Auntie Gee Gee and Lee man (their names for me and hubby for those not in the know!).

That I can’t just pop off with my sister on a giggly shopping trip or boozy meal out without wheelchairs and treatment and pain. That I can’t dance round shops laughing and joking, have a glass of wine with lunch and walking round the shops for so long your feet hurt. I love spending time with my sister, she is just the best, but that we are confined to chatting on the couch for most of the time makes me sad. I can’t laugh even like I used to when I am with her because it makes me cough so badly.

The impact on my husband has just been awful. Not that he has ever complained. We hadn’t even been married a year when this all happened. He now has to push his wife in a wheelchair, some days help me up the stairs, be on his own when I need to spend most of the day sleeping, even help me get dressed when the breathing and pain is bad. That we don’t go out for walks and nights out, dancing round the kitchen, getting drunk and silly. I don’t want this for him. I don’t want it for me either but this is his one life too and I can’t help but feel like I’ve ruined it. He is going to bollock me for saying that.

I KNOW I am in a right funk aren’t I?! I guess that’s the beauty, or not, of the human brain. That it projects these feelings on to you when you are feeling weak. My husband and family love me unconditionally. They are selfless and loving. I hope that I would be so amazing had situations been reversed. I hope they all know how much I love them and value all they do for me.

I debated publishing this blog as it’s not as positive as all the others. But I realised, not every week is a good one and these things are the unspoken effects of a long-term illness especially if you have previously been a super independent type like myself. It’s important to show all sides or else I won’t be being honest that this is my whole life. It will just turn into every other social media outlet and I don’t want that. I want this to be an honest representation of what dealing with TBM is all about and the fall out it has across your life.

Today I’m going to try and turn this mood around and do something small and nice today with my gorgeous man despite my brewing chest infection. I’m going to keep chanting on repeat ‘It’s a bad week not a bad life’ until my brain catches up and clicks in.

See ya on the other side.