Secret Holidays!

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

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

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

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

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

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

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

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

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

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

Have a great weekend everyone x

 

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 ….

 

Crying in the crisp aisle…..

The joy of this illness never ends. This week’s special prize in the game that is TBM is that I have re-awoken an old whiplash injury due to waking up choking in the night and somehow managed to pull my neck. I am in pain and I am very cross.

I also to add to that little special treat have tried some new drugs this week. The first lot made me breakout in a nice red rash and was on my way to having an allergic reaction so they were stopped and then the second lot was some anti-inflammatory tablets meant to help my pain. Which they did enormously. Except they have left me feeling exceptionally dizzy and light headed.

I also seem to waking up at 2.30 am most nights and putting the world to right in my tiny under-worked brain which does not seem to be able to switch off at night but also doesn’t want to function either in the day. Super.

All in all I’m feeling fairly broken.

So, I tried to do a thing to combat all this yukkiness. To break myself out of the house. Nothing much just a short trip with mum to the supermarket. I couldn’t make it. I had to sit down countless times. Couldn’t think straight because of the dizziness and forgot half of the stuff I went in for.

To say that I am frustrated with how I have to go about doing things now is a massive understatement. I very nearly cried in the middle of the crisp aisle. And not just because I wanted to eat all the spicy mix ups. To say I had to have a serious word with myself was an understatement.

I am tired of having to convince my body to keep moving and to keep going. It just doesn’t seem to want to receive the message to co-operate.

I am trying so hard to motivate myself to get moving with things but I feel like I am going backwards. Nothing seems to be working, I can’t seem to get my mood up for long enough and at every turn thing’s just feel hard bloody work. All the new magic medication is disagreeing with me and it all just feels a little bit hopeless this week. I know it isn’t but once I am in this frame of mind moving myself on from it proves extremely difficult.  I am in need of a win.

One highlight has been chatting to a fellow TBM sufferer this week. We met via one of the TBM groups on Facebook. It was so great talking to her. Finally, someone else who understood, who gets the illness and who coughs like me! It made me laugh when I heard that familiar cough down the phone at me. Fellow seal barkers unite! She is looking to get a support group specifically for UK sufferers set up and I am hoping to help as much as I can so that we will be able to get the word out and start helping others to not feel as alone as we did at the start of our journeys.

Next week is birthday week (hurray) so that will keep me out of trouble and occupied. Hubby is off work for the week so am looking forward to spending some time with him and the dog!

Bit of a shorter update this week on account of I am now getting dizzy staring at the screen. Someone pass me a cool cloth, a truck load of painkillers and a comfy pillow stat!

Laters x