Monday, 25 August 2014
When I was first diagnosed with having MS, to look at me, you wouldn't think there was much wrong with me. My early symptoms were painful altered sensations and fatigue but these weren't things that anyone could see. I remember finding it incredibly difficult because I was convinced that people didn't believe me. So much went on what I felt and could describe, I think that is why I have become quite good at describing my symptoms.......because I have always had to do it!
It wasn't until I had a big relapse, about ten months after those first symptoms started, that I needed to start using equipment to help me. That relapse really affected my legs and my mobility and I have been on crutches ever since.
Over a couple of days I felt my legs getting weaker, I was experiencing a few falls, at home but also out and about, and I realised when I was lying on my back, in bed, I couldn't lift my legs up, it was like trying to lift a lead weight.
I'd had quite a bad fall and had gone to A&E to check I hadn't broken anything. I had sprained my ankle and was given some ordinary elbow crutches. I used them for a bit until I thought I could manage without them but I still kept falling over. I remember seeing my GP and I asked her when I should stop using the crutches, because, every time I stopped, I'd then have some more falls. It was then that she said to me that I should probably keep using them. She said that if I had a fall and I was using crutches, people would know there was a problem and would be more inclined to help me, whereas because I was reasonably young, if I fell over, people would automatically assume that I was drunk. It was a very valid point!
It is a topic of conversation that I drive Martin mad with because every so often I will question myself as to whether I still need the crutches. It's difficult to explain but I feel as though maybe I'm being lazy and just using them for the sake of it. Now I know, deep inside me, that of course I need the crutches. I quite often stumble and there have been lots of occasions that, had I not been using crutches, I would have ended up on the floor and quite probably injuring myself, but I do feel the need to question myself about it every now and then!
When I first started using crutches I was really self conscious. I was convinced that everyone was looking at me but I quickly realised that I'm not that important! ;-)
The first set of crutches I used were the ones I got from the A&E department, they were just ordinary elbow crutches with solid handles. I soon began to hate them though because although they were helping to keep me upright, my hands were getting really dry and painful from the hard handles.
I was then told about crutches that come with a comfy grip. These are ordinary elbow crutches but instead of the straight, hard handles, they have a softer plastic that is contoured and shaped so that your hand sits in it a lot more comfortably. They are designed for those of us who need to use crutches on a daily basis. You can't get these on the NHS so I looked online, found some and bought myself a pair.
They aren't cheap but they are worth every penny!
You can also get these in different colours which is great!
I used this type of crutches for around nine years but I had horrible altered sensations in my hands, which meant using them was still very uncomfortable. I was referred back to a neuro physiotherapist. She suggested that maybe I should try a different type of crutch. There are some called gutter crutches and they have a big padded cuff that you rest your arm in, with a handle that you hold on to. It means that the pressure is all going through your arms and not through your hands.
I decided that I would try these even if they made me feel quite self conscious! They are quite bulky compared to the elbow crutches and they look quite different but if they were going to cause me less pain then I would try anything!
Another piece of equipment, that I got about five years ago, is not my favourite aid but it is one of the most useful.......it's my wheelchair!
It took me a long time to start using it. As with the crutches, I felt like I was being lazy. I think, because I can still walk, even if it's not well and it is with using crutches, I shouldn't use a wheelchair. It has taken me a long time to realise and accept that using the wheelchair is a positive thing. It helps me to manage my pain and fatigue. If Martin and I are going out for the day and I try to keep using my crutches, I am going to get tired very quickly and my pain will escalate which will then stop me doing as much as I want to BUT it will also stop Martin from doing things too. Someone pointed this out to me one day and I realised that, yes it's good to persevere and it's good not to give in but there is a time and a place to do all of those things and there is also a time and a place where using a wheelchair is a good thing too.
I think, for me, it was getting over the feeling that every time I used it I felt like I was giving in, but it's changing your state of mind which is so important. I'm not giving in, I'm taking positive steps to allow me to keep going all day. It is using an aid that I have and making it work for me! I still don't use it as much as I could but I'm finding a happy medium! :-)
Our house is now full of various pieces of equipment that are there to help me, from banisters on the stairs and grab rails all over the place, to a wet room and a mattress raiser on the bed, they all have their uses and are all there to help make my life just that little bit easier.
But they are all things that I have found quite difficult to accept.
I remember very early on, my Dad had picked up on the fact that having a second bannister on the stairs would be a good idea. I think it was after one of the many times I fell down the stairs! I was adamant that I didn't need it but Dad put it up anyway! I'd be lost without that bannister now........and yes it has prevented more than a few falls!
The one bit of equipment that I was happy to push for was getting our bathroom converted into a wet room. We had a conventional bathroom, with a bath, a toilet and a sink. There was a shower attachment on the bath taps too but getting me in and out of the bath was a nightmare. I had a bath board which sat across the bath. I was able to sit on that and lift my legs into the bath but it meant that I needed Martin's help every time I wanted to have a shower. I hated that bath!
So with the help of a fabulous Occupational therapist and a lady from Social services, they put together a brilliant application for us to have a wet room. Not only did the application go through, in record time, but we got all the equipment that was asked for! We have an electric shower with a shower chair, which means I can start the shower with the push of a button instead of needing help to turn on the taps! We also have an on the ceiling body dryer......which is a God send. I can just sit underneath it and get dry! The toilet is a special one. It's called a Geberit toilet and it's a type of shower toilet. It can be used as a normal toilet but it is also able to wash 'down below'! It is an amazing piece of equipment that we couldn't do without now. I have horrendous constipation and before I started using the Peristeen system, I could go up to two weeks without having a bowel movement......as you can imagine, it wasn't too pleasant but having this toilet really helps in managing my constipation. I couldn't imagine not having a Geberit toilet any more, we are very lucky!
My most recent piece of equipment I only got a few weeks ago and it is actually as a result of my Menieres Disease. The hearing in my left ear has been affected quite badly, I'm down to about 30% hearing in that ear. That in itself is bad enough but I also get very bad and constant tinnitus in that ear too. I have had a collar button put in that ear (a type of grommet) which has opened up the middle ear and balanced things out a bit but the tinnitus just got louder.
I was referred to a hearing therapist. We talked about what had happened and how I had got to that point. She gave us some advice about music or sounds to listen to at night which is when the tinnitus can get very loud. But she also suggested that a hearing aid can sometimes help. It can help to give the ears more balanced hearing which helps to distract you from the tinnitus. I had never had any need for a hearing aid in the past and I had no idea how they worked or anything about them really!
My therapist explained how it worked and what it would be trying to do and I decided that I had nothing to lose but potentially a lot to gain so yes I wanted to give it a try!
We made an appointment for a few weeks later where I would be fitted for my aid. I thought I'd need to have a mould taken and that it would be a little while after that appointment before I'd get the hearing aid but no, I was actually fitted with it at that appointment! There were all sorts of readings taken. I was given a couple of packs of special batteries, a case to keep it in and some instructions and a log book and that was it.......I had my hearing aid!
It was very weird to start with. It felt quite echoey but it did seem to make a difference almost straight away! I am sure my hearing feels more balanced across the two ears and it definitely distracts me from the tinnitus when I'm wearing it. The down side of it though is the tinnitus is there as soon as I take it out! It's not annoying enough yet for me not to wear it though! ;-)
The thing that has blown me away though is the size of it, it is tiny! I thought it would be quite big and because I have short hair I was sure that people would be able to notice it but it's really discreet and no one has noticed it yet........or at least, they haven't told me if they have! ;-)
The thing that Martin said to me, which is very true, is that loads of people wear glasses and no one takes any notice of that, a hearing aid is just something to give you a helping hand, just as glasses help your eyesight!
He can talk sense sometimes! ;-)
So my advice to anyone out there who needs any type of aid or equipment to get them through the day, embrace it! Think of it positively and appreciate how much richer your life is by having that aid or piece of equipment.......and I'll try and listen to my own advice! ;-)
Saturday, 23 August 2014
Quite out of the blue and a real honour for me, I was asked by the MS Trust if I would mind being the focus of their "15 minutes with" in the latest edition of Open Door, which is their newsletter.
I had been up to their offices in March to take part in their Continence Question Time video. I wrote a piece on my blog a few years ago about constipation and to my complete surprise, I've been told that it is one of the most read articles over the past ten years!
Because of that and having taken part in the question time video, they wanted to use me as the focus for a section they have in their newsletter called "15 minutes with". They ask that person a variety of questions based around who they are and what they do. From the past ones I've seen, I would say they try to have people who have a connection to MS either directly or indirectly!
Of course I was very honoured but I did wonder if I was interesting enough for people to want to hear from me! ;-)
Anyway the latest edition of Open Door is out now and inside the back page you will find my interview!
The following link should take you to a page on the MS Trust website. Click on the link that says Open Door August 2014 and that will take you to the magazine!
If it doesn't then go the MS Trust website www.mstrust.org.uk
Enter my name in the search box and it will bring up three entries, click on the one that says Open Door August 2014 and that should take you to it!