Time to get back to it.
So its been like maybe a year and a half since I wrote anything on here. (I should have just looked at the date of the last one before I started writing but wheres the fun in that)I don't really know why I stopped. Uni was pretty stressful, whenever I was writing I felt like it wasn't right unless I was writing for that. Then over the summer the heatwave was not ,my friend and I had a chest infection that just kept coming back. Then I was back doing uni. However last week I handed my last EMA in!! Yay! So hopefully I pass both modules and I have finished my degree. Although I am already going crazy waiting to see if I passed. I wont find out until July 23rd so its going to be a fun few weeks.
So last year in no particular order (will just write them as I remember):
Since finishing Mepo I havent been approved for any other drugs. I am first on the list for a couple but none have come up yet. I am still up and down between 25mg and 40mg of steroids. So I am still chubby, hungry and anxious with sleep deprivation. Its simply delightful. But I am alive so you know (I don't know how to really do emojis on here but there would be a shrugging emoji here if I did.) I have another type of inhaled steroid through my nebuliser which has helped quite a bit. But it makes me super shaky and a just a bit weird for an hour or so after so I cant really drive for a good hour or two after having it. Which means if I need to do something first thing in the morning I have to get up and have it really really early. Which I am sure pleases the neighbours at 5 am with our cardboard walls.
I don't know when this will change. . Its likely I wont ever be able to completely come of oral steroids now. As the longer you are on them the more your body depends on them. But hopefully if I cant we can get it down to a lesser amount.Its kind of hard just waiting around for it. I try and be OK with it. I know how lucky I am. But honestly its so difficult to see life going on all around you and feeling like you can never be fully part of it or enjoy it completely because your chest is tight or painful or you're so tired your joints ache. It feels like it wears me down.
Right now I am focusing on what to do next. I have been told I cant go back to work yet. I am way way to unstable and the steroids suppress my immunity a little meaning I would get all the germs. which would make my asthma worse. I am not pleased with this but I do see their point. Some weeks I don't leave my house at all the entire week and I am usually feeling so crappy and everything is such a massive effort I don't even have the energy to get bored so I guess its the right choice. I just miss it. I miss a whole lot of stuff.
I think I really want to do something to do with writing and it would be amazing to be able to do that from home. But who for? What kind of writing? Am I actually good at it? all these are questions I need to try and work out. If anyone has any ideas or hints or tips let me know. (If you read this and think 'Oh hunny no, you are not a good writer bless your heart' then please don't put it in the comments. I mean you have the right to if you think it necessary but I really hate any kind of negative thing on a public platform. You never know who might read it and get upset in someway by it please send it over privately).
So yeah, that is about it. I am shattered today so I thought it was a good day to sit and write this. I don't know who reads it or if its even interesting and sometimes I find it way too intimidating in case people think I am dull, or an idiot. But I enjoy it, so I guess I have to keep thinking of it as something I do for myself.
I hope some people read some stuff I write and think 'Oh so asthma can be severe and effect so much of someones life' so it raises some awareness. I tried at one point to make it so my blog wasn't about being ill. But the issue there is like it or not, any long term illness sneaks its way into all parts of your life. So without it would be like 'Today I watched Friends on netflix and ate a biscuit'.
Thanks for reading!!
So last year in no particular order (will just write them as I remember):
- I got the best present in the world in the form of a Sausage dog called Sausage. He is an absolute nut job, but I love him so much.
- My sister got married in an incredible Harry Potter wedding. I was very lucky she allowed me to be a massive part in the planning and on the actual wedding day. I am very close to my sister and niece and nephew and I think of her husband like a brother (who we like to make mad by coming up with insane ideas for him to help us execute and this increased tenfold during the wedding planning. But he did draw the line at fire flaming wands proving he has a limit) so wedding was both amazing and emotional.
- I passed both my level 2 modules for Uni. I hated the lit module, so instead of doing the level 3 lit I did level 3 Children's Lit alongside the writing module.Which I actually enjoyed.
- Went to the Lake District with the kids. Beautiful place Like really really beautiful. It was a bit of a struggle because it was the same time the chest infection just kept coming back, but the kids loved it regardless. I am so lucky they adapt to these things.
- Went to CarFest. Was my boys & Lee's first festival. It rained the whole day. But they were incredibly well set up for someone who is sometimes less abled. (IE me) so we had a blast. Ricky from the Kaiser Chiefs was our favourite. I always get kinda bummed I cant dance like I would have at these things, dancing was one of my favourite things however my boy danced enough for both of us. We have been to quite a few shows and sports events. I am definitely a fan of giving them memories instead of stuff. They both seem to like it that way as well.
- This year one of my friends got married. So another friend came back from New Zealand for that month. The whole month with the hen do and the wedding, was just one huge ball of emotions. The girl who was getting married is just one of the kindest most generous people I have ever met. To see her so happy was just, everything. Then in what felt like a second it was time for my other friend to go back. I don't think any of us had a dry eye when we drove home from saying bye.I genuinely am so so lucky to have the group of friends I do. I simply love them.
- Both my kids have made me proud way to many times to tell. We had choosing my girls GCSE options and choosing my boys secondary school. both of which made me realise I dont have babies anymore. She will be 14 next month and he is 11. So yeah, thats terrifying.
Since finishing Mepo I havent been approved for any other drugs. I am first on the list for a couple but none have come up yet. I am still up and down between 25mg and 40mg of steroids. So I am still chubby, hungry and anxious with sleep deprivation. Its simply delightful. But I am alive so you know (I don't know how to really do emojis on here but there would be a shrugging emoji here if I did.) I have another type of inhaled steroid through my nebuliser which has helped quite a bit. But it makes me super shaky and a just a bit weird for an hour or so after so I cant really drive for a good hour or two after having it. Which means if I need to do something first thing in the morning I have to get up and have it really really early. Which I am sure pleases the neighbours at 5 am with our cardboard walls.
I don't know when this will change. . Its likely I wont ever be able to completely come of oral steroids now. As the longer you are on them the more your body depends on them. But hopefully if I cant we can get it down to a lesser amount.Its kind of hard just waiting around for it. I try and be OK with it. I know how lucky I am. But honestly its so difficult to see life going on all around you and feeling like you can never be fully part of it or enjoy it completely because your chest is tight or painful or you're so tired your joints ache. It feels like it wears me down.
Right now I am focusing on what to do next. I have been told I cant go back to work yet. I am way way to unstable and the steroids suppress my immunity a little meaning I would get all the germs. which would make my asthma worse. I am not pleased with this but I do see their point. Some weeks I don't leave my house at all the entire week and I am usually feeling so crappy and everything is such a massive effort I don't even have the energy to get bored so I guess its the right choice. I just miss it. I miss a whole lot of stuff.
I think I really want to do something to do with writing and it would be amazing to be able to do that from home. But who for? What kind of writing? Am I actually good at it? all these are questions I need to try and work out. If anyone has any ideas or hints or tips let me know. (If you read this and think 'Oh hunny no, you are not a good writer bless your heart' then please don't put it in the comments. I mean you have the right to if you think it necessary but I really hate any kind of negative thing on a public platform. You never know who might read it and get upset in someway by it please send it over privately).
So yeah, that is about it. I am shattered today so I thought it was a good day to sit and write this. I don't know who reads it or if its even interesting and sometimes I find it way too intimidating in case people think I am dull, or an idiot. But I enjoy it, so I guess I have to keep thinking of it as something I do for myself.
I hope some people read some stuff I write and think 'Oh so asthma can be severe and effect so much of someones life' so it raises some awareness. I tried at one point to make it so my blog wasn't about being ill. But the issue there is like it or not, any long term illness sneaks its way into all parts of your life. So without it would be like 'Today I watched Friends on netflix and ate a biscuit'.
Thanks for reading!!
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