Wednesday, 28 October 2009
Saturday 24th October - the day our new life officially began!
Martin finished work on the Friday and that was that!
It was a strange week, because I had my 5th Tysabri infusion on the Tuesday and what a day that turned out to be!
It was my first infusion, where they were going to be using my portacath from scratch. I was a little apprehensive, but I wasn't going to stress myself out. Unfortunately, what did stress me out, was the fact that my appointment at the hospital was at 9.30am, the same as it is every four weeks. But we arrived there, to be met with chaos and to be asked if we could wait in the waiting area outside the ward. There ended up being four of us waiting for our infusions, sat outside in the waiting area.
Unfortunately, there had been a problem with beds over the previous weekend, which had had a knock on affect for everyone else. It couldn't be helped, but it was very frustrating. Especially as all four of us travel about 45 miles or so to get to the hospital in Plymouth, because they can't administer it in Torbay..................yet!!
In fact the majority of us, who are on Tysabri down here, are from the Teignbridge/Torbay area, rather than from Plymouth - daft eh?!
Anyway, at about 12.30pm, I was called through, as they had a recliner chair for me. But the next problem was, that I needed a registered nurse to be able to deal with my portacath. She didn't come along until about 2pm. I then had some cream put on, to numb the area for me. Then about 20 minutes later, the nurse came back. She popped a needle into the port and then flushed it and made sure it was working. Following all that, the infusion was started at 3pm!
I struggled with it to begin with, because it was so painful as it was going through. The pain spread right around the port and up into my neck. I thought I might have to stop it, which immediately upset me, because my first thought was that they would take it out and I just couldn't bare that. Anyway, I thought about how I was positioned when they administered the infusion straight after I had had the portacath fitted. I realised that I was lying down. So the chair was reclined and as the infusion progressed, so the pain subsided.
I was kept for my usual hour, after the infusion was complete, but at 5pm, my day at the hospital was complete and we were allowed to go home!
My Father, who had driven me down that day, had offered to give a fellow MSer a lift home, so we got to the car, we all piled in and I promptly fell asleep. This is fairly typical after an infusion, as the Tysabri tends to knock me out for about 24hrs after the infusion.
But I had successfully managed to get through the infusion, using my portacath. So fingers crossed, it will be less and less painful as we go along with it - only time will tell!!
Once that drama was finished with, we then got to Friday. I must admit, it was strange to wave Martin off for his last day at work. As I know it was strange for him to think he would be driving a bus for the last time! The whole day was quite surreal, because it was the same as any other day and yet it wasn't for us!
The weekend was pretty typical and nothing special. It hadn't really hit us at that point.
The week so far has been filled with trying to get forms to the correct places, filled out correctly, so that we can start getting the benefits that we are entitled to.
It is like wading through thick mud. And the most frustrating part of it, was the fact that we couldn't do anything, until Martin had finished work. We wanted to try and get it all processed, so that the money could start coming through once Martin had finished, but NO! We have to live on nothing for about six weeks or more, while they decide whether we are allowed to have the money or not!! You see our frustration!
But I will say this. Already I am feeling more relaxed. It is wonderful to have Martin around, making sure I am OK and helping me with all those "little" things that I have struggled with for so long. The house is already feeling tidier and we haven't started sorting out all the rooms properly yet. (Or got to the list that I have secretly been making - women are so good at making lists!) But the fact that Martin is here to be able to keep on top of it, feels wonderful.
We are eating dinner at a sensible time, instead of any time after 7.30pm, because he wouldn't get home until then when he was working.
It is already feeling so good.
Long may it continue!
Monday, 19 October 2009
OK, so there has been a lot happening in my life, over the past couple of months.
I started on Tysabri, I have given up work, I have had a portacath fitted and the one that I haven't told you about, is that Martin is giving up his job, to become my full time carer.
It has been a really difficult few months, I can tell you that, but when you come to a point in your life where there is a junction and you can go one way or the other, after a lot of discussions, this just seems to be the correct path to take.
It is not something that anyone can just decide to do, and I have to admit, we didn't realise how complicated it would be.
We had to be sure that this was what we both wanted. And to be absolutely honest, it is. It has come down to quality of life.
I had to be able to admit that I was struggling. I was struggling with work, it was causing too much stress, so that had to go. But then I am also struggling with things around the house. And that has been the difficult thing to admit. The fact that I am not able to do the washing up without pain, or do the cooking and cleaning. I am 36 years old, I shouldn't need help around the house. But the hard facts are, that I do.
I was also getting the portacath fitted and I need to go down to the hospital every four weeks for an infusion, so who did I want to help me with all of this. There was only one answer - Martin.
But Martin was already doing a full time job and he was also trying to do all the necessary things to help me around the house. He just couldn't do both.
The turning point came, when Martin had a week off work. That week was wonderful. We were both really chilled. I felt that he was very attentive to my needs, the housework was all done and we just felt really calm.
The solution to our problem seemed clear to us, but we had to see whether it was possible.
The first thing we did was to contact the CAB - Citizens Advice - because we knew that if they didn't have the answers, they would know someone who did! As it happens, in this area, there was an MS advocacy officer. She was able to come out to our house, go through everything we wanted to achieve and then tell us what was available to us.
After a lot of facts and figures whirling around, we had to decide whether it was something we could manage - financially, I mean. We both agreed that there were things that we could do without, so we worked it out accordingly.
We know that it won't be easy. It is a life changing decision and one that we will adapt to. But the important thing is that it is what we both want.
So Martin finishes work on Friday!
I am excited but also a little apprehensive. I am only apprehensive because we can't sort out the financial side until Martin finishes work. But once that is all sorted out, then I know we will be fine.
I had to be sure in my own mind, that this was what Martin wanted and that he wasn't doing it because he felt he had to. I guess I didn't want him to resent me a few years down the line, because the direction our life has gone, has been dictated by the MS. But when we discussed it, we both realised that this is our way of taking back some of the control. We are able to decide what and when and how, before we get to the point where the MS forces us to make these decisions.
I am so lucky. I have a man in my life, that is willing to do this for me.
Thank you Martin.
So Saturday 24th October 2009, is the start of our new life - bring it on!
The other thing I wanted to talk about today, is my portacath.
I have my fifth Tysabri infusion tomorrow and it will be the first time that we will be doing the whole procedure of using the port.
Although I have had some problems with the wound on my neck, the actual port wound has healed very well. I have a scar above my right breast, but that will fade in time, I am sure. I also have a scar on my neck, which I think will take longer to fade, but again, I think it will in time.
The one thing about it all though, was when we took the dressing off the port area and left it off, I got quite freaked out. I suddenly realised that someone had put a knife to me and planted something in my body. And I could feel it! It is getting easier to deal with but I would be lying if I said I wasn't scared about tomorrow.
I am terrified!
I know, by this time tomorrow, when the infusion is all done, I will wonder what I was worried about, but for now, I am scared.
I know that they will feel around for where it is, they will then pop a needle in - that is the bit I am freaking about! They will flush it etc and once that is all done, they will hook me up to the infusion and away we go.
I know that this will be far less stressful, than them having to cannulate me. That is why I have had this done. So I know that once tomorrow is done and I have got the first experience out of the way, I will be fine. It will be so much easier, for everyone involved.
I know all this, but I am still terrified!
So wish me luck!
Thursday, 8 October 2009
I have today found out that I have won some awards from my dear friend, Herrad.
She is the most inspirational person that I have ever had the privilege to talk to and I feel quite humbled that she has past these two awards on to me!
If you haven't come across her amazing blog yet, the address is
Herrad and her partner, Richie, deal with more in life than anyone of us should ever have to deal with. But they both do so with poise and dignity and I feel truly blessed to have come across them both in the blogging world.
I will, of course, be passing these awards on to people, but I would like some time to catch up on some of my reading first.
Although there are a couple of people, whose blogs immediately spring to mind and so I would like to pass these awards to them straight away.
Living with Multiple Sclerosis is a daily battle. MS is the invisible disease or at least for most people. We fight many emotional and physical symptoms all the time. We need as much support as we can get. However due to the invisible symptoms we tend to not get a lot of support and that brings on more emotional stress which in return brings on more MS symptoms. A Vicious cycle.
Tara's blog is always so bright and sunny and she is constantly trying to educate people about MS. Good on you Tara, and keep at it!
Nat's blog is such a diverse blog. She talks about so many different things that it is great to pop along and see what is on her mind each day! Her wonderful photos of pond life are fabulous!
Lots of love to all the bloggers out there.
It is such a great support network. I am so glad that I decided to start mine, I have found it therapeutic for myself, to actually get things off my chest, but then to get the responses and support from people out there who really care about what is going on in my life and the fact that we are going through it together and we are not alone, is something that I am very proud to be a part of.
Long may it continue!
Tuesday, 6 October 2009
Sadly, for me, on Tuesday 15th September 2009, I handed in my notice at work.
I am no longer an employee at Asda.
It was a really hard decision, but one that I needed to make, for my own health.
Here is my work story!
I was diagnosed with MS in 2002 and at that point, I was working in an office doing order processing.
From the time I had my tests and all the doubt and uncertainty that went with that, I didn't work for them for almost twelve months. I then decided that it was time for me to try and return. I knew I needed to take it slowly, so I agreed to just go back and do three mornings a week for about 3 hours at a time. I was able to do it for a little while but then about two months later, I had a big relapse. This was when my legs went and I ended up in a rehabilitation centre for about six weeks. I quickly realised that I might be putting too much pressure on myself and so I cut it down again to a couple of hours at a time for only a couple of days a week.
I remember having an appointment with my consultant and asking him what I should do about work. He was not too impressed that I was back at work, no matter how little the hours were. He wrote a letter to my work explaining that, as we hadn't got things under control at that point, it was unrealistic to think I would be back at work within the next twelve months.
As you can imagine, that went down well!!
I was referred to the company occupational health officer, who came and saw me at my house. I remember the meeting, because I have always remembered something he said to me.
He said that the only predictable thing about Multiple Sclerosis was it's unpredictability!
That has always stayed with me because it rings so true!
Anyway, it was discussed that maybe I should think about leaving. Giving myself time to concentrate on me and the MS and also allowing myself time to get my head around it all. I also realised that I was trying to go back to a job that I had done when I was fully fit. It was really hard to put that out of my mind.
So I left my job in the office in 2003.
I spent a lot of time trying to get my head around everything, but really, do we ever get our heads around it?
Time went by. In 2004, Martin and I put on our first concert, raising money for MS. That was something that would take quite a bit of time!
Eventually by about Easter of 2006, I was starting to get itchy feet. I talked to Martin about the fact that I really felt that I wanted to try and get a job again. He was fairly reluctant about the idea to begin with. He felt that, because I had tried going back to my office job and it hadn't worked out, he was concerned that I would be disappointed if it didn't work out again. A fair point, but I just needed to try. I needed to have a purpose. I needed to get out of the house and be in a situation where I had responsibilities again.
There was a new Asda supermarket being built in my town and I decided that I would apply for a job there, as I knew they would be hiring lots of people.
Asda have quite a tough hiring procedure. You have to pass the application form, then you have to go and take part in a group session and then you have a one to one interview.
I was so pleased when I got through all those processes and was hired as a checkout operator.
I was totally upfront and honest about the MS - it's a bit hard to hide the crutches! They didn't have a problem with the fact that I would only be able to manage on the checkouts and of course, it was a tick for them, to be able to hire a disabled person.
I started there on July 12th 2006. I was so chuffed!
I was able, over time to adjust my rota so that I was comfortable with the hours I was doing. I started off doing 14 hours a week, but by the time I had finished I was doing just under 12 hours a week. And my shift times had changed over the three years too.
When I started, I had big ideas about maybe eventually being able to go full time. It quickly became apparent that I was not going to manage that. So I lowered my sights!!
I did think that I would be employed there for a good few years, but that was not meant to be either.
This year has been a difficult one, as far as the MS is concerned. I had two relapses within the space of four months. The last one, I am still dealing with the symptoms, which include numbness down my right arm and hand, along with lots of pain.
Because of the latest relapse, which happened in July, I had been off work from the middle of July anyway. I really wasn't able to manage my duties, even the office duties, which I tried to do, when I attempted to go in for a shift in August.
The problem was, that I was getting myself very stressed about not being at work. I felt I was letting everyone at work down, I was letting Martin down and I was letting myself down. Of course, no-one else thought that, but I couldn't help thinking it. And it was really stressing me out.
I sat down with Martin and we talked about it. We came to the conclusion, that I really needed to put a stop to the stress, because it was just aggravating my symptoms.
So the decision was made. I took my resignation letter into work and saw the people manager, who was so lovely to me. She wanted to give the letter back to me and try and sort out putting me on a different contract, so that I could manage it a little better. I was very flattered, but as I said to her, all the time I have the possibility of a job to go to, then I am going to be pressurizing myself to get up and go to that job. I just couldn't do it any more. She has said that there will always be a job for me though, which is a lovely way to leave.
I was so upset at having to leave because it meant a lot to me to be able to go and work with a bunch of people I really enjoyed working with. But, since I have made that decision and I have left, I do feel as though it is one less stressful thing to have to deal with.
It is definitely the right decision for Martin & I, so now I just need to get on with the rest of my life!!
Monday, 5 October 2009
I am so sorry that, once again, I have neglected my blog :(
I have had quite a lot going on over the last few weeks and lots to tell you about.
Firstly, let me update you all on the portacath situation.
I went down to Derriford Hospital on Tuesday 22nd September. I had been told to go in at my usual time of 9.30 am, but that my 4th Tysabri infusion wouldn't be done until the portacath had been fitted, which would be in the afternoon. What they hadn't told me and I hadn't even given it a thought, was that there was a likelihood that I would be kept in overnight! My Dad had taken me in, so he came back home and Martin was able to put a few things together for me and then come down and see me in the evening.
It was a good job that I was there early, because by about 11.30 am, the porters came to take me down to the radiology department. I didn't really know what was going to happen or how the procedure would be done, which was probably a good thing, because I didn't have time to worry about it!
The consultant radiologist, who was performing the procedure, came and spoke to me and explained that I would be given a sedative, I would still be aware of what was going on but I also wouldn't, if that makes sense!! He said that they would be putting the portacath in the right side of my chest. They would have to make an incision just below my neck and then also further down, about half way between my collar bone and my breast, where the portacath would be positioned.
What I hadn't realised, was that it would be completely under the skin. There wouldn't be any valve or access point left out on the skin. That means that it can't be seen at all, only the scars from the wounds. It was explained to me, that when I go for my infusions, the nurse will feel for the port and when they find it, they will just pop a needle into it - just like a pin prick - and then they will be able to flush it etc and then hook up the infusion. This is great news because I don't have to worry about anything. The portacath itself, only needs flushing every month, and because I have my infusion every four weeks, the nurses will do it for me each time.
The other thing that I didn't realise is, that not only can they put the infusion in through it, they can also draw back blood from it too. This means that I should never have to have a nurse search for my veins again!
So back to the day! After the consultant had talked to me and I had signed the consent, I was then taken into the x-ray room, where there were a couple of nurses and everything was set up. I can't lie, by this time, I was getting pretty scared! They started by giving me the sedative, which they did by putting it straight into the vein in my neck. It hurt like hell and I burst into tears. I am such a big baby!!
They then numbed the whole area and I really couldn't feel anything. I had a nurse holding my hand, just to reassure me, so I shut my eyes and just let them get on with it! I don't think I fell asleep, because I remember people talking around me and there were a couple of times when I felt things going on, but one of the nurses said that I had slept through it!
Anyway, before I knew it, it was all over and I was being transferred back onto my bed. I was taken back outside, where they explained what had been done, but to be honest with you, I was feeling quite out of it at this point. I was told that I should have at least four hours of bed rest. I was taken back onto the ward & after a bit of fussing, I really did fall asleep!
I woke up again about three hours later, when I was able to speak to Martin and get him organised to come down and see me.
There was a bit of confusion, because the nurses weren't sure whether I needed a chest X-ray to confirm that it was in the correct place. But when they contacted the consultant, they were quickly told that he was a radiologist and so therefore was absolutely sure it had been put in the right place!
So all that was left now, was for me to have the Tysabri infusion and this was to be done through the new port! It has to be hooked up by a registered nurse so when she was available, she came along and hooked me up. It was so good not to have to be prodded and poked to find a vein for access. And I couldn't feel it going in at all. This was going to make life so much easier for me.
Martin arrived whilst I was having the infusion and it was so good to see him. I was just disappointed that they wanted me to stay in, after all everything had been done. The portacath was in, the infusion had been done, but they wanted me to stay so that they could keep an eye on me. Looking back on it, I know they were right to do that, even if it did mean that I didn't get much sleep!
I had been given my instructions on looking after the wounds. I had the portacath wound and I also had the wound just under my neck, where the stitches were. They were dissolvable stitches so I didn't have to worry about getting them taken out! I had been very sore for a few days after I had come home. Unfortunately, by the first weekend after the procedure, the stitches wound was really hurting and it appeared to be weeping. I was given a strong course of antibiotics and told to keep an eye on it. The last thing I needed was for the portacath to get infected, because that would mean them having to take it out again.
My Dad was changing the dressings for me and I was also popping to various nurses to get it checked too. I had a swab taken at one point, but the results of that said there was no infection. This, of course, was good news, but it doesn't explain why the wound has been so sore for nearly two weeks now and though that soreness is a 100% better, the wound itself is still weeping. I am leaving it open during the day and dressing it overnight from today, so hopefully that will stop the weeping and help it heal properly.
So there you have it. I now have a portacath fitted in my chest, I can't feel it and I can't see it - apart from the wounds - so that is great news for me!