Thursday, 17 June 2021

Onwards and Upwards

 Dear Readers,


I can't believe we're in June already! 

Things have been slowly improving and I am starting to feel much better now. Last month Terry had his second covid vaccination and thankfully he didn't suffer from any side effects this time! He was rather poorly after the first one, so we were a little bit worried on how he would react to the second, but all was good! 

Unfortunately due to my lack of iron, I've been suffering from bad migraines, has anyone got any suggestions of medication for migraines. I've tried many and they always say to me, take it as soon as one comes on... mine are always last time and I'm always too late! Any help and advice, would be great please!

Anyway now it's been 2 weeks since I had my IV iron, and I'm starting to feel the effects of it, I'm able to walk around a lot better now and I'm not as breathless. The IV iron went well for me, as in the cannula went in first time! They tried something new on me this time - they used ultrasound to find my vein and watched the screen, not my arm, as they inserted the needle. I thought it was quite painful as they were prodding around a lot, but they did manage to get in the vein first go. They also used a new cannula which can stay in the arm for max 27 days, this is great news for those who are like me, and hate having to have cannulas replaced often when staying in hospital!


With the iron kicking in and Terry being double vaccinated we decided to head out for a date night! We haven't been out since the beginning of lockdown, so it was nice to finally go out and enjoy ourselves. We enjoyed a few drinks at an open-air bar in town and soaked up the atmosphere. It felt like some normality was back in our lives!


On the work front, my job is going really well and I'm enjoying it so, so much. It's so rewarding being a Music Therapist and it's great to be in a job that I am excited about getting up for in the morning. As I mentioned I able to manage my own timetable. I choose the hours and I do work it around my PH. I want to give my work the best I can, so I make sure I am not over doing it. I'm very lucky to have a great manager who is very supportive, and I love working for her company! 


I am slowly getting back into fitness now my iron is taking effect, so I've been back on my exercise bike. At the beginning of the year I lost over a stone, but with my iron level slow it all came to an abrupt end. I have managed to keep the weight off and, but I do want to try and exercise when I can. I'm not cycling every day, but doing a few minutes when I'm feeling good and with the help of my oxygen, my sats don't drop too much when exercising. I have also been on my electric bike and had a cycle around the countryside. I'm so pleased the weather is good for us to go for a cycle again. Terry seems to enjoy working out cycle routes for us to go on! 

Talking of good weather, we had our first BBQ of the year! We bought ourselves a new BBQ and went to my Mum's for the Bank Holiday weekend. We had a lovely time and enjoyed lazing around in the sunshine! With this nice weather continuing throughout the summer (fingers crossed!) I'm sure we will make good use of our new BBQ!!


Last week I decided to go for a cycle on my own. For many this would be fine and wouldn't even bat an eye to doing this. For me, I was petrified! My anxiety was sky high and I felt sick. I knew I was only going a little way, but this felt like a big step for me. Since buying my electric bike, I have never cycled on my own, I have always had Terry there to support me. This was pushing me out of my comfort zone and doing something that I'd not done before since being diagnosed with PH. I really wanted to go out, as Essex Police were holding a marking protection scheme to protect bikes, for if they were stolen. Once I got on my bike and put my helmet on, I felt okay. I was a little wobbly to start with and my heart was pounding, but once I got going I allowed myself to enjoy the experience. We have a lot of cycle paths here in Chelmsford and I cycled along the riverside, avoiding any roads! I did have fun, and I'm glad I did it. I'm sure I will do it again, I just need to be brave again and go for it!


In other exciting news, I've finally had my hair cut and coloured! It had been nearly a year since I last stepped into a hair salon, but having my haircut made me feel ten times better. Feeling good on the outside, makes you feel good on the onside too.


Terry and I are excited to be going on holiday to the Peak District soon! There's so much to think about when we go away, even though it's in the UK. The list of medication is nearly as long as a normal holiday list and then there's the task of organising oxygen to be delivered at our lodge before we even get there. Terry, as always will be very good at checking out places we're going to visit and making sure it's as accessible friendly as possible. We'll take my wheelchair and also my mobility scooter - got to give him a day off or 2 from pushing me around! Hopefully the weather will be okay, but come rain or shine, I'm sure we'll have a great time. To be honest to get away and have a new environment after shielding for so long, will be wonderful! 

Moving forward, I'm still taking it day by day. I'm enjoying life at the moment and even though restrictions are still not being full lifted til next month, it doesn't really impact us in anyway. We are still being very careful, testing regularly and using lost of sanitiser! I've got an appointment through to actually go to the Brompton for all my usual tests in August. So it will be good to see how I am doing heart-wise and hopefully all tests will continue to show that I am stable. Until then, we will keep doing what we are doing and live in the moment!


Thank you for reading!

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