Toughest week & cancelling events

This past week has been really tough. Tougher than any I have had in a long time. Last week was week 4 of mepolizumab and was due my next dose. I always find that week 4 is tough, my peak flow drops and I feel more symptomatic and tired. This past week had been just like that. Normally I can manage my week and pace myself but not this week. I just couldn’t do it.

I hate having to pull out of events I am meant to be attending, I hardly ever do it and if I do it is normally because I have not had a choice and I am in hospital. This time though I had to pull out of things even though I was not in hospital. I think this is why ever since I felt like a failure and felt guilty for letting people down. Part of my brain keeps saying that I am not working just now in the hospital so I don’t have any excuses to not have the energy I need to attend meetings. At least when I was up at the hospital working and I came home I had a decent excuse for feeling wiped out and tired but what excuse do I have now- I don’t have one because everything I do with my day is in my control and I don’t have any real external factors that are going to make me feel awful.

On Monday I got my mepolizumab only just as had a headache from hell. I think it was a migraine rather than a headache as I was sick and couldn’t do anything. My Mum came over and drove me for some fresh air and after I just went to bed. Nothing shifted the headache- not even oromorph touched it. The whole time I was lying in bed trying to not move an inch so my head wouldn’t hurt I kept going over and over all the things I had cancelled the week before because my lungs were not great. It is just so frustrating because part of me wonders what else will I need to give up to enable my chest to allow me to live some sort of normal life. As each year comes it really feels like I am having to give up more and more, and question myself as to what will be next, what part of life will need to go so I can keep my lungs at bay.

For me I have always had the attitude I can do anything and will get through anything but this week I have just not been able to. I would say it is the first set back I have had. My mum commented how she thought I was the worst I had been in a long time and my Dad noticed how chesty I was getting when playing with Ghillie and my nephew. It is really frustrating and I am sure it is only a blip and I will be able to get back on top of things but sometimes I wonder have I done the right thing. Am I doing the rights things just now.

The biggest question I have that hangs over me and leaves my mind spinning at night is this what my life has become and is this what it will be like forever. Will I always be the sick one, the one that cancels things, the one that no longer gets invited to things, will it just be me relying on family to help me because I can’t help myself because of my stupid lungs. I always like to think I have been there for others. I would go help at the drop of a hat if someone needed it but then I feel other than 2 people it is not something I really have. Of course friends always get bored of you cancelling things and just begin to not invite you to things or keep you in the loop about stuff when you have decided to take a back seat. It is the little things like this that really hurt and leave you questioning was it worth putting all those hours in for essentially a slap in the face.

People say I need to put myself first and do what is right for me but by doing that it means others will be let down, others will get pissed off and i fear people will think I am selfish and I will lose those few friends I have who have stuck around despite everything. It would be so nice for someone to just say its ok and its not always going to be like this. Right now all I want to do is go back to being the care free person who despite having severe asthma was able to play 9 holes of golf before a 13 hour shift, go on nights out and be the last person standing, be able to play a full 1hour of lacrosse without a worry,  not need to plan in advance and think about all the hazards I might come across. I try to put a brave face on it and not let people see how much it gets to me but right now I feel weak and feel like this disease is beating me. Is this new treatment working, is there a point to keep being given it when I am not making much headway due to all the damage that has been done.

Someone waving a magic wand would be great even for just an evenings break from it al and to forget about all the worries wold be great.

One thought on “Toughest week & cancelling events

  1. Mark

    Hey Olivia,

    People who are your friends know what you are going through, they don’t think your letting them down. As you know my immune system and abdo issues have taken a lot from me, I am sure this is just a blip during treatment for you but never doubt your ability to adapt. Never forget how strong you are, look what you have overcome. Things are not as bleak as they seem in this moment while you are down.

    Mark

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