Life has been a roller coaster since March and I still feel most days I'm on the peripheral of life observing and not quite experiencing life. I've had three ambulances since March with this thing called Asthma. It's taken over my life and called a stop to it more than once since March, I'm currently on week 3 of rest after a week long admission with the last attack in hospital. The last attack was unrelenting and bazaar. Fortunately I was taken to a different hospital this time and they're not happy to just send me away after being on a nebuliser and asking me to go and see my GP. The new hospital have started me on a new inhaler routine, new tablets and steroids, most of all they want to find out whats happening and why, which is much more than the hospital I was attending previously. I have appointments coming up for more investigation to get to the route of what is going on. I have faith in the fact that they will get to the bottom of this. I NEED them too, I can't carry on not knowing what is starting me off, what the 'trigger' is.
My life has stopped, I'm confined to the house unless I'm with someone scared to go out alone, scared when I cough or become tight chested, listening to friends talk about the excitement they're experiencing with a tinge of jealousy, worrying about what people are thinking about me being absent from work again for such a long time, feeling guilty every time a family member looks at you with worry in their eyes when you cough or wheeze, constantly being told to sit down and not to push it. I miss being able to just get up and do things, yes it's lot easier than when I first came out of hospital but life still isn't what it was. When I first came out I couldn't shower when I was home alone (showering was a mighty task in it's self anyway. you'd never believe how much you can cough and wheeze just trying to get clean 😀) The steroids I'm on orally are reducing from 40mg slowly every 3 days by 5mg. I feel quite accomplished that I'm only on 15mg now but its no mean feat. The shakes, irrational mood swings, unclear thinking and the overall not feeling like yourself can be unbearable at times. The outward shaking these little pills of power have can be quite dramatic but it's nothing to the shaking I've experienced internally, trying to do normal everyday things like pouring squash into a glass at times has been a challenge but it's one I've over come, I've had too!
I was like many people who thought a spell at home from work would be an enjoyable experience but believe me its a lonely time. You quickly become used to the quiet and find lots of people around you intimidating. I'm a social person and thrive being around others but there's been times of late where I would have be happy to hide away and not come out again. I've found solace sat on the garden swing with a book or crochet hook in hand listening to the world move around me. Me sat like a bystander waiting for my turn on the wheel of life again. I struggle with my mental well being and there's been times in the last 4 weeks and the months before where I've hit real lows. I'm fortunate, I know I am, I have fabulous family and friends who have been my rock and I' pretty sure they are sick of hearing me moan. Trying to positive when you feel awful is hard and for me to admit I do feel awful is a big thing. I hate giving in, I want to continue and get that thing done. Sometimes to detriment to myself. They have ALL been amazing.
The not knowing is the hardest thing. Will it happen again? Will I be sorted quick enough next time? Whats started this all off now? Why me? What's my trigger? Is it asthma? The questions whirl and whirl when you have little else to think about. The stories that your mind can invent late at night when you're unable to sleep or when you loose yourself in a thought during the day can be scary. One of these stories convinced me I should be at work and just to get on with it as always Hubby has been my sounding board. He said fine don't listen you go back but before you do go upstairs and fetch 'X' and then sort the washing. If you can do that with no problems then we will talk about work. Of cause he was right, I failed at the first hurdle...the stairs! Bloody things have been the bane of my life. I'm so pleased we have a down stairs toilet. Although because of where it is we never really use it much but since March its been in constant use. It's a horrible place to be when your brain is telling you to one thing but your body is laughing at you, ridiculing you for having such grand ideas.
"Go up stairs without coughing and wheezing... hahahahahahahaha dream on!"
Admittedly I'm now not as breathless or coughing as much but I get so tired so quickly doing just the smallest of tasks. I tried to cook tea and had to admit defeat about half way through but rather than thinking about what I didn't finish I'm trying to think about what I have achieved. The week previous I wouldn't have been in the kitchen at all other than to carefully pour a drink so to be doing any cooking was a bonus. LOL I'm not sure the family would agree about it being a bonus though LOL
Sitting in the same four walls makes you notice the things that need to be done. The walls that need painting, the carpet that needs replacing, the garden that needs sorting, the never ending list of jobs that need addressing. Today I decided I was going to start and address the garden. Nothing big I just wanted to strim the bit of the garden that Hubby seems to miss when he mows the lawn. That was my plan and I did manage to get the strimmer out, I did manage to get some of it done, I managed to fall out with said strimmer as it kept breaking and I also manged to get frustrated with my lack of stamina and how exhausted I became so quickly. Hubby by my side told me to sit and catch my breath. I got more and more frustrated with myself and as always he had the right words to say and gave me the words of wisdom I needed to stop and catch myself before I was so exhausted I had to spend days on the sofa recovering again. Why does he always have the right words? I know why because hes scared, every time I'm slightly off it I see it, every time I cough I see it, when we're going to sleep I feel his eyes on me watching me. He's scared, his eyes tell me every time. I feel awful that I'VE made him like this. Me, I did this. He rings me and texts me all day long and knows exactly how I am by the first phone call or text no matter how hard I try not to let him know what's going on. I just want to take the pressure off him. He arranges for people to pop in or make contact when he can't get here himself. I never wanted to make someone, especially someone I love so dearly be this afraid. Hubby has always been attentive and I've always said that the day cupid bound us I was given a man above my match, hes far more than I deserve but I've made him scared. I never wanted this, I've never wanted to make my love ones worry about me. I'm finding this hard and I don't know how to put it right. I'm the worrier not them.
The teens have been through it too. Teen boy had an outburst which is totally out of character for him. No I know it wasn't all my doing but I don't think the constant worry has helped. Both teens have been a mirror of their dad fussing and checking, especially teen girl. She's dried and straightened my hair when I just hadn't got the energy or breath to do it, sat and had pointless conversations just to be around. Yes its been lovely having them around but I just wish it wasn't for the fact they're worried.
I've rambled, I'd usually apologise and say sorry but I've been banned from doing that (you know who you are) but for once I'm really not sorry. I need to get this out, I cant have it festering. I need to find peace. I need to find answers. I need to find me, I'm lost. I don't know who I am any more. The laugh is missing, the bubbly is gone. Where I don't know. What I do know is I want it back. I want ME back. No wheeze, no breathlessness, no cough, no lack of energy just boring old me. I need to find a way to find me and this is what I need to concentrate on doing.
I'm hoping to be back with a new blog in a few days, If you've read this please like it and drop me a comment.
Lots of love