Asthma UK community forum

Time to tell all

I have been putting off typing this but sometimes I may say or do things that are bit to the point and I might seem rude or abrupt and it partly because of what I went through I was unwell. I also need to do this for myself so no sympathy please I am lucky to be here and am blessed with the most awsome family imaginable my problems are all sumountable thanks to them and a wonderful team taking care or me.

Also I am hoping to be able to get out and and about more soon when my wheelchair arrives and so will no doubt bump into some of you and you might be a little suprised. Some of you might remember that I was seriously ill with a bowel complaint last year, it has had some life altering consiquences which I am fighting with every ounce of strength I have. Sometime during one of my many crisis when I was ill with the bowel problem something called a benign tremour was kicked off, it sounds like nothing and for a long time we put it down to muscle weakness after spending so much time in bed. I am now under the care of neurologist who diagnosed the problem, the only way I can describe it is like being very drunk or like a rag doll, arms and legs go off in random directions so I fall quite a lot and I can even fall with my wheeled zimmer frame. I have done a lot of work with the physios now working with the neuro ones as it is very imporant to keep working those muscles as it all helps and I have excellent muscle strength according to them. Its a bit wierd my head sort of lolls about if not supported, and I want to go one way and my legs take me another nor buckle under me I can't walk without support. My consultant likened it to ""parkinsons"" but my tremour (what an understatement) is only apparent when unsupported. I also have a bit of memory problem I forget the words and constantly write notes down in my book to remind of who said what, when and where.

I have reluctantly accepted that I will need a motorised wheelchair and my OT and physios are sorting one out with special head and neck support as well as support that will ensure I don't flop forward and ""crush my lungs"". A platform lift is being installed in my house which will enable me to go up and downstairs in the wheelchair as well as some alterations to the outside of my house and some in the kitchen so I can make a cup of tea! I will changing my car for a wheelchair accessable vehicle. All of this is being done with grants my OT has been fabulous getting reports from my various teams and working really hard to get me the help I need. I am still on NG feeding as the blood supply to my bowel is not great it complains quite a lot and I can only cope with tiny amounts of food and then I can't eat milk, egg, meat, gluten or wheat. I am a huge fan of roasted vegetables though :) I have spent months beating myself up for not getting better, at a recent gasto appointment I apologised for showing no improvement and he told me he never expected me to get off TPN let alone be managing some food and that I am far far too hard on myself.

I am accepting the alterations I need to regain some independence as my stubborness has affected my children and never wanted to do that. My 2nd son Nicko did not go uni so he could help look after me and that breaks my heart. Josh has recently been referd to the young carers club here, he has his own health issues and is only the the size of an 11 year old despite being 15, so he can't help support me when I walk, but he pops into my room every couple of hours to offer to make me tea and he tells me off if he sees me struggling to do things alone ""you only have to ask me mum"" he says.

I have not been alone in my house for more than 10 minutes since December. My OT is rushing everything through and I am delighted to say that Nicko has accepted a place at uni for next year. It is not all doom and gloom my children and I have laughed about my falls sometimes, once they are sure I am unhurt seeing me flapping about like a flounder the deck causes much amusment and I can easily get stranded just leaning across the bed to reaching for something. My family have been amazing, my bond with my sister who sat by bedside when the Dr's did not expect me to last the hour and literally dragged me back from the brink has been re-inforced. My poor mother was recalled to my bedside 3 or 4 times. My children saw me in states I never want to repeat but we are stronger family for it and I treasure every moment with my children and I am so proud of how they coped, I don't think I could have been as strong.

So if you bump into a slightly (ok totally) mad woman with strippy socks a la pippi longstocking bombing around in a wheelchair with tupes up her nose you will know it is me!

Thank you for reading (assuming you got this far) and for letting me share this with you, it is good to talk!


ps kitchen have not sent up my rice with veg just 2 bottles of NG feed Argggggggggggggggggggggg

13 Replies

hi bex

Thankyou so much for sharing your story. You are a real inspiration and i think you have coped remarkably with everything that has been chucked at you so far. Its great that you have such a close and supportive family-family are so important and really do help during the tough times!

I hope that the new equipment and aids the ot are giving you help to give you some more independence too and i trust you are recovering well in the RBH. Hope they're looking after you well! :-)

All the best bex. Your in my thoughts and prayers and i hope to speak to you again soon. Take care and lotsa lv kat Xx


Bex, wow, you are truly an inspiration to us all. Your very lucky to have such a loving a supportive family in this day and age, wish you all the best and hope the new equipment and modifications make your life a little more bearable. Don't worry about being rude or abrupt, i personally prefer people to be like that, then pretend to be something they're not just to please someone else.

ATB Chris


Bex, thank you so much for sharing your story - it's already been said but you and your family really are an inspiration! Fingers and toes crossed that you keep getting the support you need!


Bex, for being honest and putting it all down, we salute you. I've laughed at some of your posts and cheered others. Were it not for folk of your ilk, some of us newbies would be the worse off. You and a wheen of other good posters here are a true godsend.

I've not had 'biggie' health troubles just little ones but when they happen, I couldn't ask more of my family and friends

Families are like raindrops. You seem blessed with a good shower.

Very best wishes to them all.


PS no sympathy - as requested.



Thanks for sharing this!

You're amazing... keep battling on!

Your family is so blessed to have you too!




Bex not at all is your writing rude or abrupt it is perfect.

What strength you have you are a remarkable woman.

blessings to you and a wonderful family...


Kel xxx


Thankyou for sharing your story it really made me get tears in my eyes you sound like you have a wonderful family round you take care hugs ka xx


Bex, you are amazing and have incredible strength of character to come through what you have.




Thank you all for your kind reception to my long tale of woe, for the messages posted and those emailed and PM'd. Nicko visited the uni at Glamorgan yesterday and today and I have had several excited text messages from him, he has even started a list of things he needs to buy I feel a credit card clobbering coming along with Mads also heading off to uni. I still feel like am failing some how because there are somethings that will take a long time if ever to get well from and I am not good at failing. I don't know why because ""should be doing better"" has never ever been even hinted at. My inital excitement actually seeing my wheelchair and the thought of being able to make my own cuppa, has now lessed into an ""oh my gods is this what it has come to"". A dear friend tells me these are blips and we will get over them and she is right and a real inspiration to me and her kindness at hard times for her has really helped to keep me going, she knows who she is and would lightly murder me if I named her but I know this thank you will reach her.




Hi Bex

Sorry to hear of your plight, especially as of late and I am really in admiration that you are able to come through everything so bravely. It really does take strength of character.




Just wanted to say, just read your post and you have are an amazingly strong character to come through what you have and can tell you still have a sense of humour! Your lucky with the family you have and vice versa they are lucky to have you.





Dear Bex,

I was totally overwhelmed by your story. What a strong person you are. I can identify a little bit with what you said about having feelings of failure. When my six children were small I suffered an undiagnozed burst appendix and while I was at home sick, all I could think of was that I hadn't finished sewing a library bag for one of my sons to take to school!! It seems we mothers have a problem with guilt or something.

I do hope things improve a lot for you in the future,



Dear Bex

Despite it all i guarantee you are still better at making tea and doing the guardian crossword than me.

When you have your new whizzywheels i challenge you to a race my dustbin lids have go go faster stripes now!

take care




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