Question: 4. Appreciate How Relationships Based Upon Meaning, Empathy, Compassion, Trust, Connectedness And Hope Can Be Further Enhanced Wendy’s Story My Name’s Wendy And I’m 59 Years Old. I Love Socialising, I Love Going Out, I Support Middlesbrough Football Club And That’s By Biggest Hobby. I Have Two Children; A Daughter Who Is 23 And A Son Who Is …

4. Appreciate how Relationships based upon meaning, empathy,compassion, trust, connectedness and hope can be furtherenhanced

Wendy’s Story

My name’s Wendy and I’m 59 years old. I love socialising, I lovegoing out, I support Middlesbrough football club and that’s bybiggest hobby. I have two children; a daughter who is 23 and a sonwho is 17, and a husband. When I think of things that are importantto me, those three are the most important. I have a wide scope offriends and family and they’re also very important to me and alongmy journey they’re what keep me going. As I tell you my story, I’lladd bits in about them where they, you know, where they really helpme.

My story is that in 2006 I was living a normal life. I went overto see my friend and as I walked into her house, my left ankle gaveway. I knew instantly that it was broken. I went to the hospitaland I’d broken my tibia and fibula – I had to be operated on andhad pins and a plate put in. I was then in pot for six weeks. WhenI got the pot off, I had six intense weeks of physiotherapy. When Iwas doing my physio, I never felt that I was walking properly. Myleft ankle just felt it was going to the side all the time which Ihave spoken to the physio about. She said it’s about retrainingyour leg to walk again which I did.

So, I had the physio and that ended so off I went, still notfeeling like I was walking right. I went to my GP and they sent mefor another round of physio, which I had, and it improved a littlebit but not fully improved. Over the next 3 and a half years, mywalking seemed to deteriorate. I was back and forth to the doctorsexplaining the way I felt. The GP more or less in the end made mefeel like I was a bit of a hypochondriac. I wasn’t one for going tothe doctors, but it was really distressing me and you know, it wasreally affecting me emotionally and mentally because I wasthinking; is it me? Is it in my head? And then I started gettingtingling in my feet and in my hands, so I went back to my GP againand he said it was all down to anxiety and I was getting myselfstressed out.

So, I stepped back a little bit and thought I’ just going tohave ot live with this, which I did. But deep down I knew there wassomething not right. My GP then retired, and I got a letter to saythis, and was given a new GP. I went to see her, and I explainedeverything. Looking back over my notes and she understood where Iwas coming from really. She said, I think I’m going to send you fora full body scan. So, she sends me for a full body scan and thenshe says that she’s going to refer me to a neurologist. I asked thequestion why she’s referring me, and she said I just want to ruleout a couple of things which I really panicked about, but the pointcame quite quickly. When I went to see the neurologist, she saidthat the scan showed that I had multiple sclerosis which I wasreally, really shocked about and frustrated that I thought that ifmy GP had done this 3 and a half years ago, he might have found outthat I had MS and I might have been able to get medication earlierthan I was getting it.

The neurologist said that’s he would need to do a lumbarpuncture on me which she did, which she didn’t do, but I had doneand it 100% confirmed that I had multiple sclerosis. She then saidto me that she was going to speak to the MS specialist nurse, andshe would contact me, and I would go and see her, and we would talkabout medication and things. I was in a really, really dark placeand I really struggled. I was frightened to tell my children,obviously my husband was with me and it really affected him as wehave a very close relationship. But I got the appointment throughquite quickly to go see the MS nurse. I went to see her, and I toldher all my anxieties and everything about everything including mychildren. She talked myself and my husband through how she feltthat it would be good to tell the children and, so that reallyhelped.

We then went onto discuss about medication and she told me whatwas available to me, what the options are and never ever said youhave to take this medication. She gave me options, she told meside-effects of medication and it was a joint decision that we madetogether about which medication I would take, and this was aninjection hat I would have to do myself which I really panickedabout. But she said there’s one which was a bit like a machine, youput the needle in, pressed it on my tummy, pressed a button andthen was injected so didn’t have to physically put the needle inmyself which was really helpful. When I came away from my firstappointment from the MS nurse, she gave me a bit of light at theend of the tunnel that was really dark initially. So, I went homeand we then told the children, and I felt that the way we told thembecause of her advice, you know it worked really well.

We didn’t make it a taboo thing, we did talk about it but wesaid to the children that I wasn’t going to let it define us as afamily and that we will work through it and everything that I usedto do before we were going to try our hardest to keep doing. Which,you know, they were only young at the time and they were quitehappy and skipped off sort-of-thing. I lived a normal life withthem all the time they were there, obviously I had very, very darktimes and my new GP she wanted to put me onto some antidepressants.I didn’t really want to because I’d gone from taking no tablets totaking several tablets. I feel that I don’t let MS define me, welead as much of a normal life as possible. Yes, it’s affectedsocially some of the things we do, we’ve got to plan when we’regoing anywhere and have to make sure it’s accessible as now I’mhaving to use the wheelchair because I’ve deteriorated over theyears.

Emotionally, I feel that I’m in a far better place and mentally.One of the reasons I’ve got to this place is because of coming intothe University and talking to the students, it really, really hashelped me because before I couldn’t talk about it or say the words.If I met anyone and they said what’s the matter with you, I hatedsaying that I had MS, I just hated the words or if I heard it, itfreaked me out. But now, it doesn’t. It certainly sits behind me,it’s not in front of me. I hate anyone to say this is Wendy andshe’s got MS – I can’t stand that. I feel that I do as much of myinterests and my hobbies as I possibly can, and I live my life tothe full really. I will continue to do that on this journey thatI’ve been dealt with. I think really, that’s about it!