My 1st IBD day with IBD!

So this is just a quick post as I don’t REALLY know what to write but I felt that I needed to mark my first ever IBD day as someone with IBD with SOMETHING at least. 

I am currently in hospital while they try and get my IBD fully under control. I have had a rocky ride of it, becoming quite quickly unwell and then coming into hospital a number of times with treatments not really working. There have been many moments where I have questioned why on earth this was happening to me, especially right now when I have quite a few things planned (IBD not being one of them.)

With the personality type that I have, I have done as much reading as my brain will take in, and this has had both positives and negatives. There is a lot of information out there and not all of it is entirely helpful or realistic. Since starting the journey I have chosen to curtail my reading only to the stuff that I am told to read about or are mentioned as possible treatments so as not to completely freak myself out. That’s part of the reason for the blog after all. 

As a new diagnosis, I don’t have years of trials and tribulations to share, with funny anecdotes and rather more tender poignant moments, I am still learning and living and trying to work out what my life is going to look like after all this is more under control.

What I can say for now is that I am so glad for the support that I have from my friends and family and actually the wider community already. In no particular order, I would like to speak briefly about each of these and the support that they have given. 

My friends. Now I have a few groups of friends, my Wymondham Girls, my rugby girls, my ex-work colleagues from a few jobs and my uni friends. All of these people have been amazingly supportive. My Wymondham girls have been there on whatsapp every day checking in on me, making sure that I am ok and seeing if I fancied a video chat. They’ll talk poo with me and then remind me of all the stupid shit that we used to do in high school and remind me that regardless of the fact that we are 15 years on now, we haven’t really changed since we were 11 and so I highly doubt that any sort of diagnosis is going to change us now. They have made me cry with laughter while in a hospital room and that is no mean feat. Thank you ladies, you are all magnificent (if not a little weird…). 

The rugby girls have been another constant source of uplifting moments and reminding me that the normal world is still out there. I “attended” our virtual presentation evening and won two awards that meant the world to me. I have completed quizzes with them while in hospital and the rugby whatsapp group has continued to be a source of entertainment as it always has been. They have cheered at the moments I have thought that there were breakthroughs and supported  me when stuffs started going wrong. I always knew that I was part of a great team but this has really showed me that the support I feel from my teammates comes both on and off the pitch. I’ve had private messages from some of the girls just to check that I’m doing ok and offers of practical support (as much as they were able). I cant thank them enough for being there when I’m on top and also when I am not.I can’t wait to be back at training and on a pitch with you all again though with all the weight loss I might need to move to the backs (though I’ll say that very very quietly)… 

More randomly dotted among my friendship group are people that I used to work with in various different places, from schools to shops these people have been in constant contact making sure that I am doing alright and staying up late, reassuring me that I am going to be ok. Some of them have roped in parents for additional advice on specialisms that they have and generally let me know that I can do this. Some of this has included keeping me in touch with what’s going on at my old job! While I am not working, I still have a brain that needs exercising and being able to laugh about the antics of my old students has really given me a bit of a lift. Thank you to those of you that fall into this bracket, you may not all know each other but you have all helped out. 

Finally on this bit, my uni friends. I didnt keep in contact with that many people from Uni, not really sure why but this is the way that the world works, I didnt make that many course friends and the people you live with in first year are not always going to stay with you for life. Plus some of my uni friends have morphed into rugby friends and thats ok. However throughout the whole thing I have had the support of some of the people that I went to uni with more than ever. I have had contact from old uni mates who know helpful things about IBD and more emotional support than I could ever ask for over good old Facebook Messenger. I am forever thankful that these people chose to reach out to be able to help me out, they didnt have to do that. 

This isn’t quite everyone, I have other friends from primary school and things that have also been an amazing support (they just dont fit into the major friendship groups. I will continued to be amazed by how many people really care and have offered me emotional, knowledge based and practical support from my friends. I will never know what I can do to thank you all enough. 

My family have really come through in the tricky stages. My Mum and Dad have been there, night and dad answering my facebook messages, talking me through the moments of toilet attacks where I have been left crying, trying to help me all from a distance as we can’t see each other because of COVID. They have offered and provided financial support to give me the space to breathe and get myself better, they have taken me to and from the hospital, dropped my things at the hospital, offered to look after the dog when Jordan has been working and generally been amazing. They have supported me in so many ways and I am forever thankful that I was raised in a family that really and truly care for one another. We may not be the closest family who spend hours and hours with each other, we are all independent people, but if there is one thing that I know, in a crisis we all pull together and we become a force to be reckoned with. Thank you. 

And finally for this post (and a slightly soppy one) we have my delightful partner, Jordan. He has been simply amazing, continuing to support me through the diagnosis of a long term condition while being unwavering in his resolution that everything will be ok in the end. He has helped me in my worst moments, not blinked when I have spent loads of time on the toilet and made difficult decisions regarding his own family to ensure that I am protected while I was at home and immunocompromised. While doing all of this, he has kept the house clean and tidy, kept on working and kept the dog entertained. He has offered continual emotional support for me no matter the hour of the day and never once got pissed off with me (that I know about). He has done multiple trips to the hospital to bring both me and my things, collected things from my mum to bring to me and generally been a bit like superman. He’s kept in contact with my Mum so that she knows whats going on which really helps me as I dont have to have the same conversation 5 times over. Even after a long 4 days at work he will sit and talk to me and make sure that I am OK and remind me that we are going to be alright when I am having a panic. I couldnt ask for more. Thank you. 

Now we are over the soppy stuff I have to say that IBD day was never really one I took that much account of. Maybe I was a bit of a snob but I have been amazed by the wider IBD community and the information that they put out there for people to access. The community is so supportive and I look forward to taking more of a look around. 

This is by no means everyone that has supported me, there are other people on facebook and social media who have reached out with well wishes and support but these were the easiest groups to mention on a day when writing a blog has been increasingly tricky!

Thats all for now, I am onto the next part of my treatment plan in a minute, more information on that in a later blog I think. Soppy one for now, it doesnt happen often so enjoy it…. 

Please comment, like, follow, share and subscribe x