Good things are coming…

I didn’t keep my promise of blogging more did I? With 2020 being, well 2020, it felt like there was nothing relevant to say. There has been (and still is) so much information overload and just getting through the days was enough for me. I also didn’t want to be another voice thrown in the mix and like so many of us, just wanted to focus on brighter times to come.  

Safe to say I was not one of those who was inspired during lockdown/ shielding. I did not learn a new language or Ebay all my crap I have been threatening to. Nope I just dealt with the days as they came and did the best I could to stay positive and did a fair bit of internet shopping (understatement of the year!).

This weekend marked a year since I started shielding. I went in ahead of time as could see what was coming. What I didn’t anticipate (did any of us?), was that I would be there a year later with only a small break as a reprieve.  We did manage a few days away in September as a break. All done self-catering on the coast taking all our food and supplies with us to keep as safe as possible. It felt good to see some new sights and be somewhere different. But it was decidedly short lived and as soon as we were home we went into the tier hokey- cokey/ lockdown and haven’t really been out again.

September 2020 brought a new diagnosis for me along with some new medication. Following almost 10 months of tests, heart investigations, and repeat bloods I was diagnosed with Chronic Fatigue Syndrome (CFS). I hoped all the months of shielding and not being able to do too much would give my body a rest from feeling exhausted, excessive pain, struggling to concentrate, brain like fudge and needing excessive rest, but it was not to be. After many discussions with medical professionals, it would seem CFS as it is commonly known (also referred to as M.e) was diagnosed.  

Not great news but a relief to know all of what I was feeling has a name. In combination with my TBM and Fibromyalgia I’ve struggled to find good days health wise. It’s felt like each day one of them pops their head up to say hello. I don’t write this to get sympathy but purely out of honesty. I’ve spent a lot of time sleeping and resting as even the smallest of activities can exhaust me for days. I’m learning what I can and can’t do and I’m getting some help in terms of medication and support from other areas which I’m told can help. I just need to be patient and pace myself. Something I’m still trying very hard to manage. There is no easy answer or cure, just management and acceptance of what I am and not capable of. Something I am very adept at. Doesn’t make it any less of a struggle though.

There is however light at the end of the tunnel with dropping of Covid cases and vaccinations roll out. I am due my second dose in a few weeks and have hope come May time that I can try to claw some of my life back and build some normality again. It feels strange and scary the thought of going back into the world but I know I am not alone and many will be feeling the same way. Hopefully the more I am able to do the more assured I will feel.

It is nice finally to have hope, to look forward to better days to come and a return to the things, the people and glorious mundane reality of life that many of us all have missed so much.

Just a short one from me this time, as well as the tiredness, the CFS seems to have zapped my brain of any kind of creativity so I’m just thankful I was able to hop back on and write something.

Until next time. A x

Dates in time

Isn’t it funny how a specific date can affect a person. Today, this date, is that date for me. 3 years today I had a bronchoscopy that changed my world. I was diagnosed with severe Tracheobronchomalasia (TBM) and nothing would be the same again.

I am most reflective on days like today. The what if’s, for the life I had but no longer have, the changes to my health, appearance, how I feel about myself, who I am and the daily struggle that comes with living with chronic illness. That management of that becomes your story, your job, your focus. Everything else falls away.

The diagnosis date for me always has these repercussions. One day I was at work, working full time, not in great health but coping. I had the procedure to investigate what was going on, developed pneumonia in both lungs, confirmed 95% collapse of large airways and a future of life attached to a breathing machine for a good proportion of the day sharply came into focus. If you have followed this blog for a while you will already know this story, but it still hits me in the guts thinking about the speed of it all.

I have tried hard the past year to stop looking back, to stop focusing on the what ifs, to enjoy the moments ahead and largely I have achieved that. Today’s date marks me allowing myself just a moment of reflection, of my life before.

The last few months in lock-down have been strange for many. For me, it was nice in some ways, life was slower, my fatigue more manageable, more sleep, less contact, feeling safer not just from virus’ but from colds and flu. These have been outweighed with the more unpleasant side. Stress, worry, isolation, frustration and feeling utterly helpless at times. Many people have suffered in so many ways through this time, I want to acknowledge that and say everyone has had their own experiences, good and bad, all I can talk about is my own as part of the group classed as extremely vulnerable to COVID-19.

Strangely the strategies I usually have in place to minimise the boredom day to day through the winter have not cut it for me during this time. I have barely been able to write anything since April, I took part in an online writing course run by the brilliant Wendy Pratt and that helped with a focus for each day but since then I have not written a thing until today. I stopped writing in my journal, have only just started reading at my usual rate again, and have only completed a handful of jigsaws.

I got through each day on a diet of snacks, sleep, tv, cuddles with the dog, chats with my family, Zoom and Whatsapp calls. There has also been an enormous amount of time spent playing animal crossing! It must be great for those who have been productive during this time, achieving everything on their lists, being creative and finding inspiration. I was not one of them. For me, I needed to deal with each day at a time and just get through it.

The sense of life getting back to the new ‘normal’ feels hard at the moment. As time goes on I feel more, not less scared about when it comes to leaving the house and integrating back into normal (new normal) life. Mixed messages from the government, media and internet don’t help. I know it is leaving me confused about what I should or shouldn’t be doing. There is still another month for us in the shielding group to be able to go out, I hope this feeling changes and I feel more confident as we move closer to that date. Currently the thought of being in public scares me but regardless I know I will push myself and only do what is safe. I do know I don’t want to spend my life locked in at home.

This blog feels like its been a bit all over the place, much like me at the moment, and apologies for that. I am definitely rusty in terms of my writing but want to end this blog as I started it. With another anniversary. This date not only marks my diagnosis 3 years ago but also marks 2 years since I wrote and published my very first blog post. Of all the things I have achieved these last 3 years this is one of the things I am most proud of.  Many thanks for those who have read and supported me with it over the last two years and all 42 of the blog posts written during that time.

Stay safe out there all, I will try to not leave it so long next time…

 

Distance

I’ve been trying to write this blog all week. As soon as I think I had a handle on it, things changed. Now weekend has passed and some big decisions have been made for the country I feel things are settled enough to make an attempt at it.

This last week it was officially requested those in the ‘vulnerable category’ were told to immediately isolate, practice social distancing, keep remote from life, whatever you want to call it. Honestly, I had already pretty much been doing this for at least a week before the announcement was made and even for a few weeks before that I was limiting who I saw and what I did. When I read about this virus months ago, and saw what it did to even the healthiest of people, I knew it was something I should avoid. I am after all a pro at social distancing.

None of this is new, and am sure its not new to many others who have to distance themselves to protect their health. I can only speak for myself with a severe breathing condition but I am 80% isolated over the winter months as it is and keep my going out and mixing in crowds to a minimum. I’m in danger from the bog-standard flu virus so this is old hat. Granted the rest of the country getting involved with their loo roll, pasta buying, selfish hoarding madness is new but the keeping yourself out of public, hiding away to stay safe for your health. Many of those with long term illness understand and experience this regularly.

The governments approach initially was frightening to say the least. I do feel more comforted as the week has gone on that they are doing all they can. That word keeps springing into our vocabulary. Unprecedented.

Not physically seeing people is going to be the difficult one for me. The information issued talks about going out and getting fresh air (whilst keeping your distance from others). I wish I could try that! It’s not like I can go for a long walk in the country. My breathing condition already restricts that. Thankfully the sun has begun to pop out so our garden chairs have been dug out from the garage and I can safely sit out there. I just need to wrap up warm as it’s still fairly chilly. The garden will have to become an extension of the house and my way to get fresh air. Well as long as the weather stays our friend and a helpful neighbour at the back of the garden doesn’t burn rubbish every day like they did yesterday. Grrrr.

Over time I have learnt how to play the isolation game. I like structure to my day, small wins, and taking on activities that don’t rot your brain. Like endless hours on social media. I’m still not quite there with that one but the more I spend away from it at the moment, the better I start to feel. It’s about getting dressed and doing my hair even when there is nowhere to go, even if it’s just into joggers and a hoodie to go and sit in the lounge. It’s an act of not giving in. I will try to keep my body moving where I can, how I can, stretches and moving around the house, as this condition allows (even that changes day after day). I will read, write (hopefully), do some good jigsawing and kick off doing some much-needed jobs that have been on my mind for a while or at least “encouraging” the hubs to do them!

A sadness has overcome me this week witnessing the selfishness of others. I won’t dwell too much on that as I have done plenty of ranting on social media on this topic and don’t want to repeat myself. Only to say it never fails to astonish me how selfish people can be. Especially around stockpiling and leaving vulnerable groups without. It has been breaking my heart.

Currently we (myself and husband) have food, we have the medication we need and we have buckets of support. I have been contacted by so many people this week with offers of help, have had others searching for items for me removed from our recent online Tesco shop because of no stock and we have enough for a couple of weeks before we will need a significant shop again. At this point can I just point out this is how we shop anyway usually so not altered the position for Covid-19 outbreak.  People should think on before emptying the stores, before booking up all the online delivery slots weeks in advance. Its selfish and it’s not necessary if you are physically able and it is safe for your health and your families health, to leave the house.

We are exceptionally lucky and have felt very sad that not everyone will have the support system in place that we do. That there will be elderly or sick who don’t have the same network of support. It does seem like people are pulling together, certainly in my village there is a big effort in looking out for those who can’t get out. Never more have people needed to look after each other (whilst staying apart).

I’m sure the mental health side of this isolation is going to really take its toll on people as time progresses, including myself. Already I can feel myself worrying about the days that I will wake up feeling low. To combat I am trying a new routine of starting the day with some upbeat music and am lucky the husband and the puppy are in this isolation thing with me.

I am trying to think of it that in the end you are isolated as you want to be. Physically you won’t have contact except with those you live with but we have to use the brilliant technology we have at our fingertips allowing us to stay connected. My favourite part of this week has been chatting out of my bedroom window to my family and on Facetime/ Whatsapp. I can still see them, they can still see me, just not physically next to each other.

On a final note, I want to say, please take this seriously. I often feel like I can’t breathe, that’s the nature of my condition. I know how it feels to have airways that are reduced in capacity. All I can say is that it is utterly frightening. You may catch this virus, it might be minor for you, but my advice would be don’t risk it where you can possibly avoid. Not to use too many clichés, your health is your wealth, don’t gamble with it. For your sake, and for others.

Stay safe everyone, take care of each other out there and hoping this all passes quickly so normality, whatever that is.. Until next time….

Rare Disease Day 2020

In honour of the UK rare disease day this blog is in tribute to all sufferers of Tracheobronchomalacia (TBM) and Excessive Dynamic Airway Collapse (EDAC). For those who follow this blog you will be well aware of what these things are but for those who are new here let me first explain as simply as possible what both these conditions are that fall under the banner of Large Airway Collapse in the UK.

Tracheobronchomalacia (TBM) is the softening of the trachea and main bronchi which lead to the lungs. The weakening of the areas causing collapse making the airways narrow and causing breathing difficulties. Excessive Dynamic Airway Collapse (EDAC) is similar in symptoms to TBM but is caused by the muscle wall collapsing and narrowing the airways.

A sufferer can have one or the other or indeed both. Plus, a veritable feast of underlying difficult and contributing respiratory that can run alongside. Symptoms include but are not limited to severe persistent cough, inability to clear mucus from the chest, difficulty breathing, chronic infections, limited ability to exercise and move around well. Both conditions fall under the rare condition banner, but in reality, are more likely to be under diagnosed.

Treatment for both conditions is similar. Many sufferers use CPAP machines to stent their airways open like a ventilator. They can be used overnight to help users sleep and assist with opening the airways temporarily. Many (myself included) have to use them in the day as well such is the nature and severity of their collapse. Alongside this is the use of nebulisers to assist breathing and to help with mucus clearance techniques plus lots of steroids, antibiotics, painkillers and much more.

Many of those with the condition can have varying degrees of collapse but most sufferers on the ways we have been impacted by these conditions/ diseases. How much our lives changed, be it overnight, a slow and steady decline or struggling for a long time to get the right diagnosis for our symptoms.

Those dealing with the condition are susceptible to pain, ongoing infections, pneumonia, and other respiratory viruses and have an awful debilitating cough which is one of the key signs of the condition. Many of us have struggling immune systems because of endless steroids, antibiotics and constantly fighting our own airways and struggle to clear nasty mucus off our chests. We are all great friends with antibacterial wipes, washes, face masks, air purifiers, fans and many weird and wonderful things we put into place to support our lungs and the air around us that we breathe.

These conditions are not age discriminatory, no one is immune. Usually it is a result of an underlying issue, reflux, asthma, inflammatory condition, auto immune conditions, the list is endless. Anything that can have caused the weakening of the muscle enough to collapse. This is known as acquired. Younger kids and babies are thought to be born with defects this is known as primary.

Many become isolated due to avoiding picking up bugs, being too unwell to leave the house, being unable to drive, walk anywhere, or go out alone. I know for me it is not until the day of anything I have planned I know if I will be ok and even then could still have a complete collapse and have to sit on my CPAP machine for hours on end until I am stable enough.

Amongst this difficult and painful disease, we have managed to build a community of sufferers together. A place where you find understanding, knowledge and can share tips. It is also the place to turn to when feeling scared, alone and worried. There is always someone who will help lift your spirits or say a small prayer for you or utter the words, I understand.

There is a lot more to be understood about this rare and often undiagnosed conditions. Many sufferers have their own tales to tell of the dismissal, bad treatment and difficult moments when they have reached out to for help and care. Many are accused of panicking, of not being sick, or looking too well to be ill. Instead those in the know describe it as a slow suffocation. A frightening but vivid summary of what many sufferers feel.

I asked some friends and fellow sufferers if they could let people know what suffering with EDAC and TBM was like they said the following; that sometimes the breathlessness is frightening, the exhaustion overwhelming and the coughing embarrassing. That the normal every day activities that people take for granted are so very difficult and being held to a machine for a lot of the day takes time, and careful planning just to get a few hours of freedom.

Many feel that because we look ‘alright’ and ‘normal’ from the outside there becomes an assumption we are more well than we really are. I know I have fallen victim to this. Even from a qualified doctor on a respiratory ward. It didn’t matter I could barely breathe, I looked well so I was to go home (I actually had pneumonia).

For some reason (not one I understand yet) saturation levels are usually good in sufferers despite still being unable to breathe. Many suffer ongoing frustration that we are dismissed. It is frustrating, upsetting and a real concern for those who have these conditions especially as we can quickly become quite seriously ill. It leaves many sufferers feeling that they aren’t believed and having to fight for treatment or a reluctance to go and get help when they truly need it.

Many talk of the interference in personal independence, reduction in the ability to do simple things, mobility issues, the affect on mental health, body confidence (thanks steroids and inability to move around), consciousness of coughing in public, which is usually loud and deep and people look at you like you are carrying some kind of plague. Many are unable to work and had to give up careers they have worked hard for. All of this combines into a big impact on how those with these conditions feel in themselves, and at times understandably can feel very low.

This is a life long illness, there is no cure, no operations (in the UK). Things are coming, new medical developments but no complete solution. Slowly there is more beginning to be understood about the diseases particularly through a key number of consultants in the UK who are spreading the word through the charity RELACS but also through sharing their knowledge amongst respiratory teams, publishing and sharing information. Our hope is that slowly the word will get out which will mean a reduction in the dismissal many are faced with, and that treatment will become more consistent across the board.

For now, we have management and maintenance only. Many of us worry for our future, how it will look, worry for our families, for those who watch us go through it. Like with any illness the impact doesn’t just fall on the individual but has a ripple effect through all areas of life. Yet we still maintain a brave face to the world.

On this rare disease day please spare a thought for those suffering with a rare disease, fighting illness is hard, fighting to be heard, even harder.

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….

Hibernation…

It has been a while, my apologies. December went passed in a haze. I had a lovely Christmas and New Year but it was very quiet. I have been extremely weary again following this latest bout of croup in November/ December and as a result have only managed to do a small amount of socialising. The rest of the time has been sleep, cheese and plenty of time on Martha the Magic Machine (aka CPAP breathing machine)!

I have been to see my specialist this week and am due another smorgasbord of tests. I have been having problems with my heart rate beating a lot faster since my first bout of croup (the second bout didn’t help matters). My consultant thinks that my heart rate reset itself to a higher rate to account for how poorly I was and has not been able to reset back. At least I know why I am so ridiculously tired my body is working overtime!

Apart from that I feel like I am in a state of hibernation, I feel unable to do very little and at the moment I am just going with it. I have been advised due to how severe the bugs, colds and viruses are at the moment to limit how much I go out to protect myself.

As a result, I have tried to motivate to do some jobs round the house, to do something other than watching TV but it doesn’t seem to be happening. I have tried to be easy on myself and accept that this is the status quo and that my energy will hopefully return and all the nasty bugs about will move on.

Much like everyone else, January has brought with it the thoughts of trips away. We have just booked a little adventure in June to Puerto Pollensa. A place we have visited before and loved. We have gone into a disabled friendly hotel (that also happens to be beautiful, who says accessibility has to be ugly). The area is really good for the wheelchair and getting about. So, we are hoping it will be easy and relaxed. It’s definitely what we need.

I have got my repeat bronchoscopy coming in the next 6 weeks (well the day after my birthday as it turns out). Happy birthday to meeeeee! I haven’t had one done since I was diagnosed and I was so poorly afterwards, spending a week in hospital with pneumonia. To say I am dreading it would be an underestimation but they have to repeat them to assess the deterioration or if Magic Martha CPAP is holding off further collapse. Not that there is much left for me to collapse at 95%.

I have chopped all my hair off (well someone else did!) I had a nice pampering session and got rid of the mane. I was hoping to donate it again to the little princess trust who use donated hair to make wigs for kids going through treatment for cancer and other illnesses. I have done this before and was hoping to do it again. Unfortunately, the massive doses of steroids I have been on for the croup had wrecked my hair and it was very brittle and in bad condition. I hadn’t helped matters by setting it on fire whilst I was lighting a candle either! Burnt hair does not smell good! So, a snap decision was made and the mane was no more.

It feels nice to be in a new year although I miss Christmas, long lie ins and having my husband about every day. Let’s hope that 2020 brings all us TBM warriors a bit of peace and periods of relative wellness.  For me, and I know many others, the latter part of 2019 was a struggle, I was relieved it was over.

I had some huge personal achievements for last year; being able to go to my take that concerts, holidays with family, a new treatment called Kore Therapy which is helping my body strengthen and realign (although my lungs are left well alone). I had some short pieces published from an online course I did, and my blog and story featured on the Cure TBM website.  There have been some awful moments too but I’m not going to dwell on them. I’m just going to concentrate on what life has let me claw back and the sense of achievement and happiness this has brought.

I desperately want to have some adventures this year, use my brain more and start to enjoy life around all the medical tests, treatments and illnesses so am looking forward to all 2020 has to offer. Until next time… (I promise not to leave it so long).

An appeal to the universe…

It has been another rough run. The croup returned with full force a few weeks ago. I felt desperate and did something I don’t do very often I put a wish out to a higher power, said a prayer, appealed to the universe. I need a break, my little family needs a break, things had just got too much.

I caught an awful heavy cold from a snot bag who chose to sit directly next to me in the doctors (weirdly for once I wasn’t there about my lungs). He was sat next to me for two minutes in total coughing and sneezing. I froze, didn’t know what to do. All that anxiety about catching bugs hit me full force. I couldn’t move, I didn’t want to be rude. I just sat there and panicked and tried to cover my mouth. The damage was done. I should have moved, and what did you know I started mere days later and deteriorated fast and then the croup which I thought I had got rid of awoke again. Didn’t that serve me right. The best guess is that it has been sitting dormant since September and hadn’t fully gone.

It has been supremely tough. I avoided hospital by the skin of my teeth, again and have felt very poorly. All the steroids antibiotics, cough and cold remedies, medicines, lozenges and sprays you can shake a stick at. I am over two weeks into it now and still poorly. I have also managed to share it out to my husband and family, sorry about that guys!

What this has shown me is that the time has come now to accept I need to wear a protective mask at the doctors going forward. Every bad infection, exacerbation can and does have a detrimental effect and croup is dangerous for TBM sufferers. I need to stop catching things and get over my embarrassment in being seen in a mask in public. So, I have bought a fabulous zebra print one to wear, no hiding in the background over here! A small positive for this time of year is that it has been a full twelve months since I have been admitted to hospital. An important milestone.

Our fur baby also had her second operation which meant return trips to Liverpool whilst feeling so unwell. It has been hard trying to take care of her whilst feeling so poorly myself. She has had some complications which has made me sad but have had to some good couch cuddling which I think is helping us both. Her stitches are now out so she at least is on the mend.

We have also been dealing with the renovation of my husband’s previous marital home which has been a nightmare. The long-term tenant moved out and well to put it lightly, trashed the property. It has taken months to resolve and is still going. Through the kindness of family, he has done a lot of the work himself but it has been a hard slog. He started in September when I was suffering the first bout of croup and isn’t finished yet. I have been unable to do very little, contribute any time or energy to helping get things sorted and that has been very difficult for me to sit back and accept that.

So that’s where the plea came from. A plea for peace, a little break from health issues flaring and some calm times is all I want right now. I know life doesn’t work like that but if anyone is listening – can you oblige?

It’s safe to say the final quarter of this year has been a tough one. Sept was wiped out with croup 1 and October recovering. November, I had 2 weeks of feeling more like my (new) normal self and now right back to square one with croup 2!

It is increasingly hard to keep dealing with these barrages of health problems. I am nothing short of exhausted. I always try to put a positive spin on things but feel worn out. I know that this will pass and things will soon feel brighter than at this point in time writing this blog but the fight is hard but you remain strong because there isn’t a choice not to.

I have tried so hard to separate myself from this disease so it’s not all that there is about me but for some reason it doesn’t want to separate itself from me. I just feel that it is three steps forward and two steps back. I have to be patient and let my body do what it needs to.

In the meantime, I have Christmas films and hot drinks under the blanket with a snuggly puppy. Not all bad I suppose.