Asthma vs 30+ Degree weather…

So, anyone who has asthma and suffers in this heat will understand how ridiculously impossible it is to breathe in this weather. I’m trying my best to not let it stop me and sitting around as frankly it’s inevetable that i’m going to end up in hospital again so may as well enjoy what i can of the sun. However, even sitting in doing nothing i can hardly breathe. I feel like i’m on nebulisers all day just to cope with this weather and this heat… It’s also hard doing anything with low oxygen levels because it makes me that much more tired. Not feeling so good in this weather, it may look nice and it’s nice to enjoy for like half an hour and then the moment passes when my lungs start protesting. I just really hate that i can’t enjoy the weather the way i’d like. 😦 Although at least i’m a little less pale than my usual hospital white vampire look!

 

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Festering and smelly!

So being in hospital in 20 + degrees heat isn’t fun, it’s stuffy and i’ve been so poorly so i’ve been staring to get a lingering smell coming out my room… aka ME. So finally figured that if i can manage a small wash (for one my nurses will appreciate it i am sure!) and then i can tell doctors im well enough to go home! Well, came out struggling a little bit and gave my nurse heart attack with sats of 77% after coming out. Some oxygen and nebulisers brought me up to 88% back in to semi normality. Needless to say i’ve had a stern telling off to not attempt that again and i’m pretty sure my doctors aren’t going to be discharging me in the immediate future! Wish my body would just co-operate for the small tasks.

On a good note, least i don’t smell anymore 😀 Always plus to everything!10-popular-quotes-reimagined-for-fashion-girls-1597576-1450318844-640x0c

Absent but still here!

So it’s been quite some time since i’ve shown my face really, well typed a load of rubbish. However, not really sure where to start. Once i was out of hospital after my 6 week stay i managed a whole 5 weeks at home in the sun, enjoying life like a normal person then unfortunately my body caught up with me and was back in hospital again. In that time i managed to get transferred to my specialist hospital for a day trip to see my immunotherapy doctor who confirmed that i don’t have an immune system and that i will need to have 2 weekly immunoglobulin infusions for a year or so to try and build my immune system back up. after a week in hospital i managed to have 2 days at home but i think i picked something up in hospital which unfortunately made me very poorly and i ended up in intensive care because i was just too tired to breathe and i ended up with very low oxygen levels. I’m down on the normal respiratory ward now in my hospital bubble trying to avoid any more infections and i just found out today that i most likely have the starts of a degenerative condition with my airways which is probably why i’m always so short of breath. They are trying to manage my oxygen levels so that i can get home without needing home oxygen but not really sure whats happening. Too ill to really leave hospital but my immune system can’t handle being in hospital so they are trying to find a middle ground where i’m good enough to get home. It’s kind of hitting me hard at how bad my health has been. I found out recently that i have cateracts in my eyes due to the steroids plus my osteoparosis, myopathy, cushings syndrome, bad liver, no immune system, bronchiostatis, asthma and im 25 years old.

 

Guess this is the start of it all…87cb06e214133c6ad5f06b32080d40fc

Sun, Allergies and Asthma!

The good, the bad and the ugly. Everyone frequently says to me “oh now the weather is nice your breathing is going to be much better” No, really that isn’t the case. You’d think so… i’d like to hope so.. but it really isn’t. I have terrible allergies, i’m basically just allergic to most things in life and if they don’t set my asthma off, they block my nose up, which usually then goes to my chest and then into and infectin.. which then sets my asthma off. So no, now the weather is improving.. that doesn’t make much difference to me.

 

The good thing about the weather is how much better mentally it is, being able to just sit out in the sun and breathe fresh air. That is so worth setting my breathing off sometimes. When you spend so much time breathing hospital air, barely even seeing the outside let alone breathing it and seeing it… It’s just so nice to enjoy it. The best part is although physically i’m not able to do much, i’ve now got my own mobility scooter meaning i can get out with my dogs on walks which is what i really love.

 

Bring on summer i say! Just keep pollen to a minimum please!

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Stupidity – Doing the same thing and expecting different results

Sometimes it can be hard to accept everything that happens in my life, half of it I usually ignore hoping it will just go away, and the rest I just downplay. I rarely accept things for what they are. I had my hopes up that after 6 weeks in hospital that i’d get some magical cure for my asthma and i’d start getting better. I was nieve in thinking that. Okay they found out a little bit but not much has changed and I’m still struggling with just as much. My breathing is still rubbish, my immune system is still terrible and surprise I have a chest infection at the moment and typically it got worse and it’s now in my lungs. I’m on two types of antibiotics to try and tackle it, 2 days in and i’m not really feeling any different. If anything i am still getting worse. I’ve not even been home a week so i’m not going to give in to going to hospital anytime soon. I’m just so done with hospitals right now, but i feel like how am i ever going to stay out because there is always something making my breathing worse.

I feel fed up with everything, i feel like it’s all too much. Struggling to breathe all day every day sucks. Doctors want me to have a better quality of life and i don’t. I don’t at all. It’s just getting worse.

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Home sweet home

I’m sorry that i’m not very consistent with posting, although i don’t really do anything with my life i always feel so busy and never have time for anything.

Updates:

So this weekend I managed to escape home (all be it at 10pm at night) and get into my own bed. This was without a doubt the nicest feeling and worth the struggle i had getting up the stairs. I’m back home with my family, my bed, my dogs (which are my babies) and my niece who is 5 and a mini me, and my nephew who i’ve only actually seen one day since he was born and he’s now a month old!

First night back and i slept till 11am in the morning without even batting an eye. Best sleep i’ve had in ages and completely worth all the struggles just for that one sleep. Then i decided as the stairs are such a struggle i’d only go downstairs for a little awhile and just do it the once so when i came back up it was for bed. So i stayed in bed till lunch and went down for lunch and came up in the evening.

My first whole day home couldn’t have been a better day, it was a Sunday so the whole family were home including my brother who is a lorry driver and isn’t home all the time. It was such a sunny day, I had some nice time sitting in the kitchen having a chat and a catch up and then i spent some time outside in the sun (suprised i didnt burn as i’m half vampire now, espeically when i see the sun about 5 times a year) watching my dad and niece do some gardening and playing outside. Plus my dogs were sunbathing and chilling in the garden too. Then i had a nice dinner and went up to bed to chill. I certainly struggled breathing wise and my legs were agony but it was such a nice day back and worth eery bit of pain.

Next day i didn’t sleep at all because i was in so much pain with my legs and my breathing just wasn’t great. So all of today i’ve been exhausted from not sleeping. However i’ve had a nice day chilling, made a whole bunch of CD’s for my car and ordered a few things online, spent some time with my dogs and my niece and nephew… overall it was a good day.

I’m certainly glad to be home, i know i have a long struggle ahead of me with lots of physio and i know i’m going to be in lots of pain building my strength up (combination of so many weeks in a hospital bed and my myopathy from the steroids) and getting fitter again.. Not to mention my oxygen levels are now perminantly on the lower side but doctors have decided i’d have more quality of life not having oxygen at home but it means that i’m perminantly more short of breath and tired.. not to mention i get a bit more of a brain fog because of it. However, im hoping that when i build my fitness up more that it may help a little.

 

So here is to being out of hospital and hopefully onwards and upwards!

Snuggles with the little man!

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Doctors who think they know me better than I know me…

So this amazing doctor thought it would be a good idea to say how i can walk amazingly and it’s good or me to walk more. Baring in mind my mobility issues and that i’m limited on my walking and have severe muscle weakness as well as being prone to falls. I only had a fall a week and a half ago which ended up with me twisting my knee which was just starting to feel a bit better, then last night after being forced to walk to the loo at the other end of the ward, not only was it too much for my weak legs but it was too much for my knee and my breathing went to crap also. So last night consisted of excrutiating pain, me nearly ending up on the floor, a doctor having to come out and see me in the middle of the night, lots of nebulisers and being put back on oxygen.

 

Now this morning i’m still in agony with my knee, it’s huge and swollen as well as being hot to touch… My breathing isn’t great and i’m not sure how i’m going to move anywhere. I’m meant to be having my lung function test again today which i need my breathing to be good for and instead i’m not sure how i’m going to get there and not sure how i’m going to manage the breathing tests.

Hopefully physio come up and help sort all this out. I just hate that i’ve been working so hard to build my strength up and i know my bodies limitations and now i can’t even move, i’m in agony and on even more pain meds. All i wanted.

I don’t know how many times i said i couldn’t do that kind of walk. Best part is i need the toilet but have no idea how i’m going to get there. Today is not a good day. When i find out what doctor has said i can walk fine, they aren’t going to know what hit them!

 

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Procrastination 101

I’m not going to lie, i’m probably one of the worst procrastinators. I could probably write a book on excuses i use that make no sense and have no logic and are just me being lazy half the time. My worst one whilst being in hospital is building myself up for the dreaded shower. Most people can just have a daily shower, no bother it’s a 5 min job that doesn’t take much energy and is probably quite relaxing.

 

I’m going to tell you all the reasons why showers for me are purely necessary and not enjoyable or relaxing.

  1. It’s exhausting – i’m so weak and fatigued doing the smallest of tasks. by the time i’m undressed and on the seat in the shower that’s half my energy gone already. Then washing and drying takes away all remaining energy that i barely had to start with.
  2.  The steam and heat makes it nearly impossible to breathe – So i’m already super short of breath and exhausted and now the steam is just making it that much harder to breathe adding to all my issues.
  3. Muscle fatigue – i’m so weak that by the time i’m half way through or finished my legs are like jelly, this is usually when my legs give way and i fall.
  4. Falling – nearly every time I’ve fallen, it’s been because of showering and exhausting myself or from having a wash and then ending up on the floor. So now my confidence about showing is just really not that high.
  5. Recovery time – It can take me hours of nebulisers to be able to breathe properly again after sometimes it can be a good day or so before i’m back to functional breathing.
  6. brittle bones – yes that’s right, i’m 24 and have thin bones. so when i fall i’m highly likely to break something.
  7. blood thinners – if i fall i’m also at risk of heavy bleeding due to the fact i’m on blood thinners for my blood clot.

So for all of you that have a nice relaxing shower after work, or in the morning when you get up. For me it’s one of the hardest things i have to do.

I want to have a shower but i have a test tomorrow morning to see how good my lung function is, and it’s a hard test and my lungs need to be good for it. So having a shower tonight will only set me back and make the test nearly impossible tomorrow. Then i’ll be too exhausted to have one after, especially with physio after. Which means it’s another day without a shower.

Sometimes, I get so frustrated that my health prevents me from doing some of the most basic things in life. Something other people don’t have any issues with, yet for me it’s one of the hardest things. I best 99% of people wouldn’t even consider that asthma can affect lives in more ways than just struggling to breathe. This is just another one of those things.

So, another reason to procrastinate my shower…

Day after tomorrow maybe. or maybe tomorrow evening depending on how i feel…

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Hospital gym sessions!

Although i’ve been cooped up in a hospital bed far too much lately, i’m finally able to get the support needed with physios to get me stronger and keep me moving. Today however was just crazy hard. So i was taken off to the hospital gym and 30 mins later I felt like i’d just run a marathon. Can I also point out that just a week or so ago I fell over in the last hospital and twisted my knee so it’s not like my lungs are the only thing preventing me from doing loads, plus my muscle myopathy from the steroid use.

Unfortunately, they are persistant here and it’s not a one off and she will be back again tomorrow for more torture. Hopefully, it will all be worth it and in a weeks time (as i’m expected to stay here at least another week) I will be able to walk and do more by the time that i’m home.

Right now im only able to walk short distances with a stick and my legs often give way and wobble which is when i usually fall. My confidence is slowly going and everything is just so much harder. I frequently get stuck in chairs and i get defeated so easily. I’m appreciative i’m getting the help, but that doesn’t mean i’m not going to swear at the physios when they are pushing me. I know it’s their job and i know i need to do it and i’ll be better in the long run. That doesn’t mean i need to enjoy it. I’ll try everything they ask and do my best. Just a lot of swear words involved.

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Perfume + Asthma

For those that aren’t triggered by smells and perfumes, you may not get my complete frustration on this matter… However, for those of you that do get triggered by smells you should understand how incredibly agrivating this situation can be. So there’s me, 4 and a half weeks in hospital and i’m finally getting somewhere and my breathing is improving then a lovely agency nurse comes onto shift in a respiratory/lung hospital after bathing herself in a ton of perfume. It was all downhill from there. Instantly my lungs just went into protest, my airways decided they were going to go into panic and i spent the next 6 hours severely struggling to breathe and having nebulisers constantly just to try and get past the attack without needing to have a doctor called and IV medication started. Then after it finally settling, she came back in this morning which started me off all over again. I feel like it was one step forward and two steps back… My oxygen levels were only 85% this morning all because of this.

I just hate it because for 1 nurses and doctors shouldn’t be wearing much perfume anyway.. then it just makes me feel defeated that i can be doing so well, spend so long improving and just one bad day can set me back so much.

Sometimes, i just feel frustrated that i can try so hard with my body and it still does what it wants… I get anxious about things setting me off because i never know when a bad day is coming. All it takes is one persons smelling of perfume, one person walking past smoking, someone having a bbq… that’s it. I wish I wasn’t so easily triggered but frankly my airways are just so sensitive.

 

Here’s to the nurse who just set my recovery back.

 

This is our door to our room… Made no difference!

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