Rescheduling Life! – I don’t want to, I have to!

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*Sigh…

Lots going on as usual but the past couple of weeks, health wise, have been terrible. I have had to reschedule so much and it’s a constant thing now. I try (more like hope) to plan for something, get excited the couple of days before if I am at a base level of sick that I can live with but then at the 11th hour I have to cancel because my health has decided to go batpoop out of the blue!

Just this morning I had to let someone down having agreed to take part in something (voluntarily, social network wise) that would have given me, and you as the readers that interact, an incredible opportunity to raise awareness of Dysautonomia, EDS, all the related conditions and rare diseases in general. It was supposed to start Monday, However, given the closeness of nearly calling an ambulance on and off over the past couple of days, it would have been really crappy of me to take something on that I may not be able to fulfill so I had to step down for now. It broke my heart to do it too, but hopefully I may get another chance.

This past week, last Sunday, I had decided to go and support a couple of friends at ‘The People’s Park’ where they had a wonderful Art Performance called ‘Nice Screams‘ as part of EVA International Biennale of Contemporary Art in Limerick in Ireland. They are called ‘Softday‘ and they are mega, be sure to check them out.

But yeah, had to let them down the last minute also because I was so ill that every time I attempted to move in the bed I vomited and this with the savage nausea ended up making me very tachycardic. The 2 days before this I had been ok, sick but manageable, had even been speaking to one of my friends in the wee hours of the morning saying that I had been good and was looking forward to going to see their piece. A few hours after going to bed though, that all changed. I held on hoping something would change but I couldn’t realistically go anywhere the state I was in, then Keith couldn’t go either because he can’t leave me alone incase I syncope or seize without breathing.

It’s a shyte state of affairs to be honest, but I also know I am not the worst case either. There are far worse than me out there. At the same time though, it’s still not easy having to be constantly supervised and those doing the supervising cant move an inch either. I think that is very unfair especially on my Husband as it is fulltime for him.

Tuesday the 26th I had an important consultation with Dr. Akbar in Cork University Hospital. He is a Gastroenterologist and from what I hear, he is very good and very well up on EDS. He is also well acquainted with Prof. Aziz in London.

When I was over in London meeting Prof. Grahame who diagnosed my EDS Hypermobility type, with possible overlaps of other EDS types, he heard about my stomach and gut issues and strongly urged I go and see their Neurogastroenterologist called, Prof Aziz. I haven’t been able to get over since (Tried a number of times to get over and had to cancel because of mostly hospital admissions and their recovery) and now, I currently have been told not to travel for health reasons and as such until I can go see Prof. Aziz in London, for now at least, Cork is closer to get to. Except on Tuesday, we again were in the territory of calling an ambulance. I had to reschedule and thankfully I got another appointment for the 17th of May. Hopefully I can make that one. I am so pissed I had to miss it, especially when it would have been good for him to see me in that state, but I couldn’t even get to the car without passing out.

Wednesday: nothing on but my neck and base of my skull started giving major trouble. Thursday: again nothing on but the pain was significantly worse, this time with serious inter-cranial pressure bringing me close to syncope every time I sat or tried to stand up.

Friday: Woke to moaning, my own moaning! I couldn’t move my neck at all. The migraine and pain was so bad I was not able to so much as open my eyes without wanting to scream. Every breath in, swallow, slight movement made my neck, base of my skull and what felt like my entire brain from searing! Extreme dizziness, fatigue, nausea and mostly pain. The thing was, If I could stay upright, I probably would have lived through the pain to go anywhere but if I tried to go more than a 45º angle off the bed I was starting to black out.

I had a pain specialist appointment that day in The University Hospital Limerick and I was in too much pain to go!

How does that even make sense? 😦

It was an important appointment too in that I would have been getting some neck X-ray results back from a couple of weeks ago to see if it needs to be escalated to an MRI, if not an upright MRI, and booked in for more steroid injections into my SI joint and the Occipital nerves of the base of the skull. Also, just like Tuesdays appointment with Dr. Akbar in CUH, it would have been great for him to see me in that state to understand the extent of what happens.

It’s not the pain, or nausea or anything, I can live with all of those,  (well sometimes I can’t but there is a constant baseline of sick that I live with daily that is manageable) but it’s the constant NCS/Vasovagal Syncope (They are the same thing) especially when it happens and my breathing stops, that’s what stops me in my tracks.

Then here we are today, Sat the 30th and I had to cancel that thing I was meant to be doing starting Monday (What I spoke about at the start of this rant!)

*Sigh…

I’ll just have to continue rescheduling life until I am physically able for these things. I feel guilty about this, feeling like I have let people down yet I know I can’t help it either! :/

Do you folks (Mainly with chronic illness’ but I would love for anyone to reply!) have to constantly reschedule? Do you feel bad for doing so while also knowing that IT IS IN NO WAY YOUR FAULT! or… am I just a strange thing?!

Share your thoughts and thank you so much for reading. 🙂

I had a HIDA Scan a couple of weeks ago too, I will do a blog post for that alone, it was an interesting if not somewhat boring test, but ill fill you in on that next time 😉

 

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2 thoughts on “Rescheduling Life! – I don’t want to, I have to!

  1. While I do not suffer from chronic illness I can relate to the feeling of guilt for letting people down even when there’s nothing you could have done differently. Even knowing that it’s nobody’s fault, and that others do not in any way blame me or hold me responsible, does not keep me from feeling terrible about it! I try as hard as I can to let it go… there are plenty of things I can legit feel bad about 😝
    On another note, sorry to hear things are especially hard right now. Hope you get to all your appointments soon and that things get a bit easier x x

  2. Oh, Lette, I’m so sorry. I have not even a quarter of the problems you have, yet when having to re-schedule appointments I feel so guilty. I hope the people I talk to don’t think I’m a whiny wimp, but can’t help it if they do! I’ve been trying to get a broken tooth pulled for a month — have made 4 appointments and had to break all of them because of a bad reaction to an antibiotic prescribed for yet another problem. Oh, worra, worra! And Charlie is my Keith — he watches over me and does all he can to keep me comfortable. He even comes into the living room [I sleep in my recliner] and watches me to make sure I’m breathing! Several times I have scared him because I breathe so lightly when I’m asleep, he thinks I’ve died. What we put our husbands through, and how we appreciate their caring. All we can do is say “Tomorrow is another day” and hope for better times with the next sunrise. I feel your anguish, and pray for better days for all of us. Much love to you and Keith.

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