tag:blogger.com,1999:blog-711396098826909299.post6043031734226282383..comments2024-01-01T23:50:46.656+00:00Comments on Inside Martyn's Thoughts: I'm Scared it might be time.Martyn Kitney http://www.blogger.com/profile/07564829931381366013noreply@blogger.comBlogger38125tag:blogger.com,1999:blog-711396098826909299.post-27067426045543424622016-02-16T10:14:54.842+00:002016-02-16T10:14:54.842+00:00Your attitude to your illness is fantastic. I wish...Your attitude to your illness is fantastic. I wish more people would look at how to adapt so they can still participate in as much of life as possible. I have Ehlers-Danlos Syndrome & have just had to make the decision to use a wheelchair. My assessment is in two weeks. I will be a part time user to try to preserve muscle tone but will be using the chair for outside of the house, as I'm currently not able to get out. I intend to toe propel at times to exercise my legs & will be walking for short distances with the handle bars for support. It's going to have such a positive impact on my life by allowing me to do more & I hope that as & when you need to start using one it will have a positive impact on your life too. Xx<br /><br />Tania | whentaniatalks.comTaniahttps://www.blogger.com/profile/07856491585948580741noreply@blogger.comtag:blogger.com,1999:blog-711396098826909299.post-73708606789329287462015-12-18T20:30:31.587+00:002015-12-18T20:30:31.587+00:00I admit I don't know Much about muscular dystr...I admit I don't know Much about muscular dystrophy except that it gets worse and has no cure. For 5 years Throughout my teens my mum was in a wheelchair, although she was ill for a good many years before that. I spent a lot of time caring for her (I still do, although she is no longer in a wheelchair) as her child I never felt that I missed out on anything because of her illness. I actually have a lot of fond memories of her in her chair (like trying to push her round this massive grassy hill and nearly tipping her out!) When she was no longer in her chair I struggled and felt like something was missing, it was bizarre being able to walk along side her when we went shopping instead of behind her. <br />Fight as much as you need to but don't feel you've failed if you go into a wheelchair. Having grown up with a parent in a chair, I can honestly say, (from the child's view) it's not all bad. XTanyahttp://www.happyhandley.comnoreply@blogger.comtag:blogger.com,1999:blog-711396098826909299.post-22282756544647640752015-12-08T15:23:11.255+00:002015-12-08T15:23:11.255+00:00Keep fighting the good fight, Martyn. It's a b...Keep fighting the good fight, Martyn. It's a bitch knowing you are fighting against a progressive condition - I watched my mother-in-law battle against MS for years before finally succumbing to a wheelchair - but, if nothing else, you are teaching the boys such a valuable lesson about the value of not taking the easy route. You're an inspiration to them - and to others.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-711396098826909299.post-9038973871508933582015-12-03T13:20:19.704+00:002015-12-03T13:20:19.704+00:00Haha I've got my thermals now! Such an old man...Haha I've got my thermals now! Such an old man! <br />Yeah, it's all trial and error in these situations with what is possible. I won't give up but do need to think more carefully about things! Martyn Kitney https://www.blogger.com/profile/07564829931381366013noreply@blogger.comtag:blogger.com,1999:blog-711396098826909299.post-17618991738984375582015-12-03T13:19:06.274+00:002015-12-03T13:19:06.274+00:00Thank you. That means a lot! I will always share. ...Thank you. That means a lot! I will always share. Any information is just providing more awareness for a rubbish illness. Martyn Kitney https://www.blogger.com/profile/07564829931381366013noreply@blogger.comtag:blogger.com,1999:blog-711396098826909299.post-47111833978134156342015-11-26T22:34:42.837+00:002015-11-26T22:34:42.837+00:00I suppose you have to take these things one day at...I suppose you have to take these things one day at a time, it could be the last time you walk, but it might not be. The weather has been really truly shocking and I hate going out in it and I only have poxy raynauds. Don't push yourself too hard! And get some thermals ;-)Natalie Streetshttps://www.blogger.com/profile/09564242362169762710noreply@blogger.comtag:blogger.com,1999:blog-711396098826909299.post-75067344839467871822015-11-26T21:29:09.343+00:002015-11-26T21:29:09.343+00:00Thank you for sharing a bit of your life and thoug...Thank you for sharing a bit of your life and thoughts Martyn. I was surprised as well and hadn't realised. I can't begin to imagine what you are going through. I admire your fighting spirit and determination and thank you once again, for sharing as it has shown me, just a little on what you must go through on a daily basis. Very poignant post. Anonymoushttps://www.blogger.com/profile/15096315867430850466noreply@blogger.comtag:blogger.com,1999:blog-711396098826909299.post-79961168412011483242015-11-25T21:55:48.960+00:002015-11-25T21:55:48.960+00:00Im coming back from #abitofeverything. Thanks for ...Im coming back from #abitofeverything. Thanks for sharing this with us, Tracey xx <br />P.s I think as and when you have a chair, you should totally deck it our like Davros's chair (my sad attempt at homour) xxTracey Abrahamshttps://www.blogger.com/profile/15645995238253581548noreply@blogger.comtag:blogger.com,1999:blog-711396098826909299.post-90839966423115491762015-11-25T16:42:06.422+00:002015-11-25T16:42:06.422+00:00That's ok. You're not the first to not kno...That's ok. You're not the first to not know. Shocked a few people back at Britmums when they met and saw me. Although I do mention it I suppose I don't write about it this way enough. But thank you anyway. Martyn Kitney https://www.blogger.com/profile/07564829931381366013noreply@blogger.comtag:blogger.com,1999:blog-711396098826909299.post-14755840834958848622015-11-25T16:40:22.721+00:002015-11-25T16:40:22.721+00:00Thank you Tracey. I'm trying to. I've got ...Thank you Tracey. I'm trying to. I've got to keep it up for the boys sake at least and carry on. Just hard to go through at times. But ill always carry on and adapt some how.Martyn Kitney https://www.blogger.com/profile/07564829931381366013noreply@blogger.comtag:blogger.com,1999:blog-711396098826909299.post-84504343958968475452015-11-25T16:39:10.802+00:002015-11-25T16:39:10.802+00:00Thank you Lady Nym. That's the hope at least t...Thank you Lady Nym. That's the hope at least to show awareness, stage by stage. Fingers crossed it's the combination of things though. Martyn Kitney https://www.blogger.com/profile/07564829931381366013noreply@blogger.comtag:blogger.com,1999:blog-711396098826909299.post-16947289430290721882015-11-25T16:37:48.366+00:002015-11-25T16:37:48.366+00:00Thanks Kyles. I hope that's the case too! Sorr...Thanks Kyles. I hope that's the case too! Sorry it was a hard read. But thank you for taking the time to read and comment. Martyn Kitney https://www.blogger.com/profile/07564829931381366013noreply@blogger.comtag:blogger.com,1999:blog-711396098826909299.post-42941694783577995822015-11-25T16:36:29.304+00:002015-11-25T16:36:29.304+00:00Thanks Leanne. That's exactly it. There's ...Thanks Leanne. That's exactly it. There's always the end result and it's to do what you can in the meantime to cope with it and stay as well as you can. But that end goal is always coming....just when. Thank you. Martyn Kitney https://www.blogger.com/profile/07564829931381366013noreply@blogger.comtag:blogger.com,1999:blog-711396098826909299.post-90280571218743714452015-11-25T16:34:54.224+00:002015-11-25T16:34:54.224+00:00Thanks Nat. It does stink. Haha yes, definitely!!Thanks Nat. It does stink. Haha yes, definitely!!Martyn Kitney https://www.blogger.com/profile/07564829931381366013noreply@blogger.comtag:blogger.com,1999:blog-711396098826909299.post-82415084036085883822015-11-25T16:32:14.685+00:002015-11-25T16:32:14.685+00:00Thanks! I'm looking into yoga now, to see if I...Thanks! I'm looking into yoga now, to see if I can do a one to one slot with someone. Hoping it'll help a little and be enough.Martyn Kitney https://www.blogger.com/profile/07564829931381366013noreply@blogger.comtag:blogger.com,1999:blog-711396098826909299.post-59727388217493549842015-11-25T16:30:41.375+00:002015-11-25T16:30:41.375+00:00Thanks Hannah. I'm watching the weight and dro...Thanks Hannah. I'm watching the weight and dropping a few pounds each week now which is a start. I've got my winter woollies out too so should keep my legs warmer. So hoping with these that it'll help a bit. But we'll see. I know, the worst thing to happen is fall and injure myself to the point that I actually need it, or worse. Martyn Kitney https://www.blogger.com/profile/07564829931381366013noreply@blogger.comtag:blogger.com,1999:blog-711396098826909299.post-33724536724139832182015-11-24T23:45:03.095+00:002015-11-24T23:45:03.095+00:00My God Martyn. I had no idea you suffered this ill...My God Martyn. I had no idea you suffered this illness at all! I admit I've not popped over to your blog in a while but whenever I have, I've seen the home schooling posts and didn't look at anything else. Am stunned and so sad reading this, I just don't what to say. Others have said it beautifully. #ABitofEverythingAbsolutely Prabuloushttps://www.blogger.com/profile/12496967028006114895noreply@blogger.comtag:blogger.com,1999:blog-711396098826909299.post-83891480589592369552015-11-24T16:13:46.812+00:002015-11-24T16:13:46.812+00:00This must be such a hard thing for you to have to ...This must be such a hard thing for you to have to come to terms with but we can be strong in mind if not in body and you come across as a strong man. I agree with the lady above. You are educating people and it's admirable. I'm just sorry that this is happening to you. #abitofeverythingTracyhttps://www.blogger.com/profile/05571227724053042771noreply@blogger.comtag:blogger.com,1999:blog-711396098826909299.post-69474753447900630152015-11-24T13:32:36.881+00:002015-11-24T13:32:36.881+00:00I hope so badly that it's a combination of wei...I hope so badly that it's a combination of weight change and weather and will pass. Nobody should have to go through a progressive condition like this. The fact you're able to write about it and educate others and the example you must be setting though, are admirable.<br /><br />#abitofeverythingLady Nymhttps://www.blogger.com/profile/17721420961173930843noreply@blogger.comtag:blogger.com,1999:blog-711396098826909299.post-3689891784446091322015-11-24T12:47:23.827+00:002015-11-24T12:47:23.827+00:00This was gut wrenching to read. It certainly says ...This was gut wrenching to read. It certainly says something about your way with words that you are able to convey this terrifying reality in such a powerful way. I hope that some brilliant medical scientist somewhere comes up with something to help keep you up and active with your beautiful boys for a long, long time. #abitofeverythingKyles @ Pickles and Pordshttp://picklesandpords.comnoreply@blogger.comtag:blogger.com,1999:blog-711396098826909299.post-40381635888143592642015-11-24T11:56:41.213+00:002015-11-24T11:56:41.213+00:00Progressive diseases are so awful - you know where...Progressive diseases are so awful - you know where you're heading and all you can do is fight to stay well for as long as possible. I so admire your determination to stay on your feet despite the scariness of it all. I hope you get a remission or some other blessing to give you more time out of that chair. xLeannehttps://www.blogger.com/profile/05623420015695351280noreply@blogger.comtag:blogger.com,1999:blog-711396098826909299.post-37993325593978358472015-11-24T10:39:52.133+00:002015-11-24T10:39:52.133+00:00Yes, a bad fall could be terrible and tbh ive my n...Yes, a bad fall could be terrible and tbh ive my near misses. I suppose ive put this at such a bar level that now it's close it seemed bigger. Thank you, I'm sure we'll adapt. Martyn Kitney https://www.blogger.com/profile/07564829931381366013noreply@blogger.comtag:blogger.com,1999:blog-711396098826909299.post-89416188263917020092015-11-24T10:38:22.005+00:002015-11-24T10:38:22.005+00:00Thank you. I really appreciate it. Thank you. I really appreciate it. Martyn Kitney https://www.blogger.com/profile/07564829931381366013noreply@blogger.comtag:blogger.com,1999:blog-711396098826909299.post-24754980179361481142015-11-24T10:37:46.505+00:002015-11-24T10:37:46.505+00:00It could quite be numerous reasons or just the big...It could quite be numerous reasons or just the big change. I hope it's the first. <br />We are doing subtle things to help. Movement and balance exercises but these are more to keep me going long than correcting it. I might see if I can find a private teacher though and give it a try. Martyn Kitney https://www.blogger.com/profile/07564829931381366013noreply@blogger.comtag:blogger.com,1999:blog-711396098826909299.post-13072159448609865482015-11-24T10:35:30.652+00:002015-11-24T10:35:30.652+00:00Thanks Alan. It's something in some ways that ...Thanks Alan. It's something in some ways that you get used to it but when the bigger changes happen it sure is tough. <br /><br />I hope so, am sure we'll find a way.Martyn Kitney https://www.blogger.com/profile/07564829931381366013noreply@blogger.com