I have been obsessively on a diet for as long as I can remember. I wouldn’t say I have an eating disorder but I’ve certainly had an unhealthy approach to food at times.
Last September I decided to put an end to that after reading “The Goddess Revolution” by Mel Wells. I highly recommend it to anyone that’s struggled on diets or has a love hate relationship with food. It’s a fantastic read and helps you to see how you can change your attitude towards food . You ditch the diet mindset and focus on intuitive eating. Trouble is, as I’ve not been banning pizza and chocolate, I’ve intuitively just eaten a lot of that stuff.
Luckily, I’ve only put on about half a stone as a result. But it’s time to heal that.
Mel works on you finding your “BIG WHY”. Why do you want to heal? It’s got to be big and something that you emotionally connect with. It’s got to be big enough to make you want to stop and truly look after you by eating good, nourishing soul foods. And no, I want a sexy summer bod, ain’t enough!!!
For some people, it’s so that they can get a body that will give their unborn child the best start. For others, it’s so that they can lead a happier life filled with vitality and adventure – where they truly love and respect their body and don’t let it hold them back.
For me it’s something else. For me, my “why” is so that I’m strong enough to fight this battle I’ve got. My strength that I’ve built in the gym in the last four years is something I will eternally be grateful for – I seriously question if I’d still be as mobile as I am if I hadn’t built my strength as much as I have done.
This realisation is the immediate kick up the arse I need to get back to training and eating well.
In the spirit of this, I’ve spent the last hour prepping Buddha bowls and I’m off to a new gym tomorrow!
Unfortunately, the 10K that I really wanted to run for Wigan MS Therapy Centre this year, isn’t going to happen – there’s no way with going in for treatment I’d be able to be fit enough in time.
For now however – I’m just going to do me, without a diet plan and without setting myself stupid goals that I obsess over and then feel crap for because I’ve failed at them. They make me unhappy and they do not nourish my soul, never mind my body!
The diagnosis didn’t really feel as life changing as I expected it to. It was a relief. Don’t get me wrong, I knew that I was in for a tough time over the coming months, but that confirmation made me feel better, not worse.
I started this blog soon after my diagnosis, and just writing it, regardless of anybody actually reading it, was more therapeutic than I could ever have imagined. Getting my story down gave me a sense of clarity in my mind, beyond anything I could have imagined.
If there’s one thing I knew that I wanted more than anything though, it was for my diagnosis to not be in vain. I wanted good to come from it.
I’d been in touch with Pete since I’d arrived back from holiday. Pete is someone that I’ve followed for some time on Twitter, as a fellow Wigan Warriors fan. We had met on one occasion, just a matter of months before at the Post Office. I didn’t make the connection that it was him. He held the door open for me and as I passed through I noticed that he was wearing his work uniform, which was incidentally for a rival company to the one that I work for so he stuck in my mind. Later that night I received a tweet. The awkward “was that you, or wasn’t it?” tweet that I’d sent myself on a couple of occasions!
So why was I in touch with him?
Well, he is the chairman of Wigan MS Therapy Centre. His wife Karen, also has MS. I knew about the centre as he talks about it regularly on his social media. He works seemingly tirelessly to raise funds for the charity. A number of people had mentioned his wife Karen to me since getting diagnosed – plenty of people in the rugby community know them, and everyone has such amazing, positive words to say about them both, but Karen in particular. I could see what people mean – they always look like they’re having a whale of a time in their Facebook posts!
How inspirational is that?
A few weeks back, Pete had shared a post asking for volunteers to help out with some bucket collecting for the Centre on the Saturday before Mother’s Day at the Big Tesco near us (is it just me that refers to them as ‘little’ and ‘big’ Tesco?!) As Dave was having a nerd out at Comic Con in Liverpool, I was at a loose end and volunteered myself for a couple of hours.
I’m so so glad that I did. Finally meeting Pete and Karen, and other people in my shoes was a breath of fresh air. Being around people that “get it” is something I completely under estimated.
I’ve also finally gotten around to visiting the Centre (which incidentally Dave’s brother, Mike, has recently done some work on the roof of). It’s awesome! There’s an accessible gym for those who can’t workout with ease at a regular gym, as well as a therapy room. You can get a great variety of treatments such as Swedish, Indian Head and Hot Stone Massages, Aromatherapy, Crystal Therapy, Reflexology, Reiki Energy Therapy and Hopi Ear Candles. I’ll tell you now – I’ll definitely be getting involved in this!
Most importantly, during it’s opening times, there’s always a brew and a friendly face around for a chinwag! I can definitely see me spending more time here when I’m off work in the future 🙂
Following my last appointment, where my Specialist and Danny told me all about my treatment options I’ve had a lot of thinking to do. My decision hasn’t changed from what I had decided in my last post.
Today, I confirmed to Danny that the route I want to go down, is Lemtrada.
In the time since my last appointment, I’ve been in touch with Ana, a patient of Danny’s who has responded well to treatment. Ruth, a new friend who also has MS, added me to a group on Facebook for people who are thinking about Lemtrada as a treatment option, or already going through it. I was a bit wary of this at first as we all know my prior experience of forums kind of sucks. I’ve found it a very real, balanced environment though. It’s not full of whingers. It’s really supportive and feels far less “toxic” than some of the other forums that I had previously come across. If anything it’s helped me confirm my decision.
So that’s it.
Next steps are my case going to an evaluation panel where my Specialist applies for funding. From what I gather, this is more of a tick box and with the story that my spine is telling with so many lesions, it’s without question that he’ll be successful. After that I’ll hear from my Specialist, with a date.
Then it’s just sitting tight and waiting (yeah, waiting again!) for a date to go into hospital. The challenge is waiting for a bed, but Danny thinks that I should be in by June.
I need to start thinking of all the questions to ask him, because here’s how good my questions were today:
– Can I travel to Essex if I decide to spend some of my recovery down there?
– Are you going to put me in a cotton wool house?
– Can I still hang out with Poppy (the dog)?
– Can I still drink gin?
No. I don’t need to be wrapped up in cotton wool, and I can live a reasonably normal life in the period after treatment within reason (i.e. keep away from “germy” folk). I can have gin, hang out with Poppy and go to Essex if I decide to do that.
Today, I actually feel elated. I feel like I’m getting somewhere. And as I said to Louise the other day:
It’s been difficult for me to write this blog, hence why this one has taken a little longer to come compared to the others, which have more or less been churned out. The difficulty being, that my most recent appointment didn’t really go as I expected it to go, with a combination of both good and bad news. This has lead to a lot of questions and some huge decisions for me to make. It’s definitely easier to write these blog posts once the dust has settled a bit!
It’s been a blur of appointments since I first stepped into the Optician’s back in June. Following my last appointment where I was diagnosed, I’ve had a further two. Early March, I met with my MS Nurse, Danny. I like Danny. He definitely knows his stuff!
My first meeting with him wasn’t much more than an initial introduction and confirmation of what I already knew about the condition. He talked me through what I could expect from him, which included three monthly appointments. He also shed some light on my next appointment, in a further 10 days, with an MS Specialist. Last Friday I had that appointment with my specialist.
My appointment was at 9 am at Salford Royal. I was a bit miffed as it’s a bit of a trek (my other appointments had been in Wigan), but the way the dates fell, Dave was working a Saturday so was able to take Friday off to be with me, which was a huge relief. I was really struck at what a lovely, warm hospital Salford is. I get the impression that this is fairly recent, but compared to my experience of hospitals historically, this one felt far more fresh and modern.
I was called in for my appointment by an MS Nurse, Danielle, who sat me down and told me she needed to get me to do a couple of tests prior to meeting with the specialist. I was used to being prodded, poked, liquids taken from me and liquids added to me as well by this point so I wasn’t phased. But it wasn’t those types of test.
You know the show with Philip Schofield, The Cube? It was like that! I had to put all these pegs into holes and take them out again with one hand, and then do it with the other hand, all the while Danielle was sat with a stopwatch in her hand. Oh the pressure! She explained to me that she was just testing how long it took me so that a benchmark was set. That way they could test how long it took me next time, and check for degeneration. She also timed a 25 metre walk, again, to set a benchmark for next time I was in.
Following a ten minute session in The Cube, I was then sent to wait to be called in.
If there’s one thing that sticks in my mind about all the medical professionals I’ve encountered, it’s how kind, friendly and reassuring they are, and this specialist was no exception. I went into the consultation room, and took a seat. He asked me to give him a timeline of my symptoms and everything that had happened (I was getting very well rehearsed in this by now!) and reviewed my scans.
He looked through pictures of both my brain and spine, then asked me to sit up on the bed. He did all the reflex tests just like Dr. Tyne had. He tested my eye sight (then started laughing at me for making the letters up when I couldn’t see them!), and did the tuning fork thing as well. This one was particularly concerning, as he’d whack the thing that looked like a tuning fork, then touched it on my foot asking me to tell him when I couldn’t feel it anymore. Within roughly two seconds I could no longer feel it. This didn’t really bother me until he repeated it on my hands and lower arms and I could still feel it about 10 seconds later. Definitely something wrong with my lower limbs there…
Once all the tests were finished, he sat me down, made notes on what had just happened and then told me that I’ve clearly had this going on for a very long time. He said that my brain wasn’t causing him any concern, but there were so many lesions on my spine that it suggested that my MS was very active. One more relapse, could result in irreversible damage. Equally, that might not be the case. But I may not continue to be as lucky as I have been. He even said that he was surprised that in spite of all the lesions that I had, I was still as mobile as I am.
He then went on to tell me, that in terms of medication, he wanted to hit it hard and aggressively.
This came as a shock. Perhaps even the toughest blow I’ve had so far. I was almost expecting to go into that appointment and be told that it wasn’t bad enough to medicate (you only qualify if you’ve had two relapses in two years and I thought that I might have missed that slightly). Having read all sorts of horror stories on forums (bloody forums!) about them, I thought there was a chance I’d even make the conscious decision to not medicate. But not this.
He presented three options to me. Mavenclad, Tysabri and Lemtrada. All come with their own risks and varying levels of effectiveness. There are pros and cons to all. Mavenclad for example is only about 60% effective in terms of halting progression. Tysabri is about 80% effective but it involves a day in hospital for an infusion every 28 days. Lemtrada is the one that medical professionals seem keen for me to go on. It’s intense, but it’s also the one that although on paper it’s the same level of effectiveness as Tysabri, in practice it’s a touch more.
I was really overwhelmed with all the information. This is something I’ve struggled more and more with – if I can get the same information by reading it somewhere, please just stop talking to me, and give me the written stuff! I asked if there was any written material, leaflets or websites available. Anything with everything I needed to know in a written down format so that I could digest it at my own pace.
As it happened, Danny was at the hospital that day, and not out and about visiting patients. After he took some of my blood (they needed to prove that I’ve had chicken pox and apparently my word isn’t enough!) he grabbed a free room and talked all the options through with me. Dave and I probably could have made a decision there and then that Lemtrada was the option that I wanted to go with, but in spite of the urgency to make a decision, he still wanted me to take a week to reflect before confirming what I wanted to go with.
I’d planned to work from home that afternoon, but honestly, my brain was a mess! I didn’t have a flipping clue what I wanted to do. I was in shock from finding out my MS has caused more spinal damage than anticipated. I was scared, but equally reassured by the treatment options available to me.
My Dad is the absolute voice of reason so although through discussing it with Dave and Danny, my mind was pretty made up on Lemtrada, I needed his opinion. I sent him an email detailing the basics of each. He read through it but ultimately felt that we needed to go with medical opinion.
So Lemtrada it is. I’ll be confirming this choice to Danny on Monday.
Lemtrada works by killing off your white blood cells – your immune system. I’m being switched off and on again! The idea is that the new white blood cells don’t do what my current ones are doing (which is attacking my nerves). You have two rounds of it, 12 months apart. Probably within the next two months, I will be an in patient for five days at Salford whilst I receive my first round of infusion. I’ll get sent home with a sick note from work for about six weeks and all the antibiotics as I won’t be able to fight infection. Then I go back again in another year for round two, which only goes on for three days this time.
The only other snag is that I’ll have to go for monthly blood and urine samples at Wigan Infirmery for five years. This is just to keep on top of the more serious possible side effects such as thyroid problems, clotting issues and kidney failure. I can stomach a needle in me every month though to keep on top of that!
And in amongst all of this, the good news is that I still don’t need a lumbar puncture!
As I came into the new year, and I still didn’t have an appointment of any kind, I found myself getting more and more frustrated with the lack of communication from the hospital. I’d been putting on this brave face, but it was wearing thin. I say putting on – I wasn’t. It was real, but cracks were definitely starting to appear. Limbo and I weren’t really getting along very well.
I’d been quite open with people about what I was going through. I’d talked a lot about losing the sight in my left eye and never really thought that it would end in such a serious diagnosis. People inevitably asked how my eyes were doing, which then resulted in a conversation about what had happened since.
I’d more or less become accepting of my unconfirmed fate, but then equally I started to worry. What if there wasn’t anything wrong with me, and there had been all this fuss for nothing? How would that go down when someone asked me how I’d got on, and I’d be saying “oh that? I was just being melodramatic and it was nothing!”
During the second week of January, I was at work and Deb asked me how I was getting on and where I was up to. Every emotion that I’d stopped myself from feeling came tumbling out. See, so many people had told me how brave and strong I was being. I felt the need to live up to that, and I made it so it wasn’t ok for me to feel what I perceived to be, the less positive emotions. But all it took was one person to ask the right question, and I couldn’t hold that brave facade.
After a bloody good cry, Deb helped me set myself some actions (I know that’s so transactional and “work like”). I needed to feel like I was in control somehow, and having a “checklist” of things to do helped that.
See my GP to sort out my Vitamin D (my prescription hadn’t been right and I needed more tablets)
Call my Neurologist’s secretary for an update
Contact our employee assistance programme at work. I didn’t think I needed to speak to someone, but it was probably worth sounding off to someone before it became something more serious
My GP was easily sorted, as was contacting our employee assistance programme. The bit I struggled to do was contact my Neurologist’s secretary. It wasn’t that I was trying to bury my head in the sand. I just didn’t want to be a pain in the arse.
With a bit of a nudge, I did call the hospital. When I told them my name, before I’d even said what I wanted, she told me she’d been dealing with trying to get all my records from Liverpool just that morning. I couldn’t believe it had taken that long! How hard could it be to just email over some files?
She told me that she had managed to finally get all my information together (I forgot to mention before, when I went to my first appointment with Dr Tyne, she had nothing except my referral letter. She couldn’t get access to the MRI’s and all the rest of my records without my permission). Now that they had all my information , although Dr Tyne was on annual leave that week, she was confident I would hear from her by the end of the following week.
What a relief. I had another appointment in sight.
The secretary must have sensed my stress and need to see someone for more answers, because the following Wednesday I got a phone call from her asking me if I could come in the following morning to see Dr. Tyne.
Dave had a day’s holiday he needed to use by the following Wednesday, so he was able to take the day off, and come with me to this appointment.
The best news that Dr. Tyne was going to give me that day, was that I didn’t need a lumbar puncture. She showed me the brain and spinal MRI scans, and pointed out wispy areas of white on both. These were signs of inflammation, lesions or scarring (these words seem to be used interchangeably). She had all the information that she needed.
I had MS.
She confirmed that it was relapsing remitting, and discussed next steps. I would have an appointment with an MS Nurse, and I would be referred to a Neurologist who specialises in MS, based at Salford Royal. This specialist would be able to discuss how I could medicate to prevent the progression of the disease. Dr Tyne said it would likely be oral, or injected medication, either daily or a number of times a week. She said there was a good chance that my MS wasn’t aggressive enough for anything more full on.
I left in reasonably good spirits – instead of feeling like a weight had landed on my shoulders, I felt like a weight had been lifted from them. It was bittersweet to hear my diagnosis. Deep down, I’d had a pretty good idea that that’s what it was for four months. If we include the time from when I went blind, I’d had problems for seven months. That’s a long time. I was so relieved to know that so much about how I am, was now explained. I knew I’d have more waiting to do, but the diagnosis and confirmation was the key piece of information that I needed to be able to completely come to terms with everything that was happening to me.
I called Steph to tell her the outcome of the meeting. She asked me if I was taking the rest of the day off, and the Friday off. I decided that I would, even though I wasn’t sure if I needed it. In hindsight, I’m glad that I did. I needed that time to process the information more than I appreciated.
I never really intended there to be so many parts to this story! So if you’re still with me, Thanks! I’ve wittered on quite a bit, but I’ll keep going.
Once I returned from holiday at the end of September, I waited for what felt like ages for my first appointment with a Neurologist. It was a strange period of time, I didn’t know what was wrong. I didn’t have somebody to contact. I spent time wondering if I’d been forgotten and lost in the system. Much as the NHS have been amazing, the lack of communication has driven me mad at times!
Whilst Dave and I had been on holiday, my Mum and Dad had booked a cottage for a week in Pennistone. They’d booked it so it was big enough for my brother and Dave and I to go and join them for a few days. The plan was, my Mum and Dad would travel up on Friday, as would Matt (my brother) and then Dave and I would either join them later that evening, or Saturday morning. We were due to go on 3rd November, but as luck would have it, my first appointment with a neurologist ended up being on the 2nd November.
My Mum and Dad absolutely made my day when they told me that they were going to be coming up the day before so that they could come to my appointment with me (well, one of them at least – they had their new dog, Reggie, in tow!) It was like it was all meant to be.
In the end, it was my Mum and Dave that came to the appointment with me.
I really liked Dr Tyne. She didn’t know whether or not I had been told what I was having investigated. All she had was a letter from Liverpool telling her that I was being referred and why. So the first thing she asked was if I knew why I was there.
I then went on to give her a potted history of symptoms and experiences, not unlike the story I’ve told via these blogs. It was just as well Mum and Dave were there, as they managed to fill lots of gaps as I was forgetting so much. As the symptoms were tumbling out of my mouth, I started to realise just how much wasn’t quite right with me. I astounded by how much I had let slide, and not been to see anybody about. Everything individually seemed so small and insignificant, but all together, I realised just how NOT right everything was.
She took me off into a side room, leaving Dave and my Mum in the main room. Here, she seemed to be testing my reflexes and reactions. She asked me to follow her finger with my eyes, she pricked me with a pin to see if I could feel pain, and she tapped what looked like a tuning fork and tested for how long I could feel the vibrations in different parts of my body. She made me stand still with my eyes closed, walk along with one foot in front of the other, made me push against her with my leg and did that thing where she tapped just below my knee to test my reaction. My performance in these tests certainly varied!
After completing those tests, I was told that I’d need to go for more tests. She wasn’t prepared to commit to MS as the diagnosis at that stage and wanted to rule out other possibilities, for example Lupus. Even so, through our discussion, she kept on coming back to MS.
She suggested that if I had relapsing remitting MS, I would likely be eligible for medication, as I’d had the required two relapses in two years. In order to determine if that was the case though, I needed to have blood tests and a further MRI scan on my spine.
Unless my symptoms were completely characteristic of MS, I’d also require a lumbar puncture. This was the bit that scared me the most, and I didn’t hesitate in telling her so. She told me that at Salford Royal, where I would be going, they do them five times a day and I’d be fine. This helped a little bit, but not a lot. I still wanted to avoid it if I could!
Before we left, she asked us if we had any questions, but with nothing more to ask, we left.
I struggled to hold it together as we made our way out and once again the floodgates opened. Seeing that it was hard for my Mum to watch me go through this, really got to me. I felt awful for her and my Dad.
Dave came with me to get my bloods done. I’m not a fan of needles but I’m certainly not terrified of them. The seven vials of blood they took off me was a lot though! It went on forever.
A few weeks later and I had the results back. In the spirit of taking whatever wins you can, not that I was worried about it in the first place, I was thrilled to find out that I didn’t have Hepatitis, Syphilis or HIV. I did however have extremely low levels of Vitamin D and needed to get them replaced by my GP.
A bit of Googling told me that Vitamin D deficiency is normal in this country, but particularly low levels were common in MS patients. In all honesty it felt like another nail in my fate.
Whilst waiting for an appointment with my GP, I got some high dosage one a day, vitamin D supplements in Tesco. That dosage is not high. What is a high dosage, is twenty times the strength twice a day for ten days and once a week for six months. My GP prescribed me that after discovering that my Vitamin D levels weren’t just low, they were non-existent!
My spinal MRI was in early December, and I was told I’d get results in about two weeks. Great! I’d get my answers before Christmas!
Christmas came and went – I had no letters calling me in to give me answers but on the plus side, I also didn’t have a letter calling me in for that lumbar puncture.
Then it was the new year. And I was sick of waiting around.
It’s slowly growing momentum, we’re now up to 47 members, who are all sending gorgeous happy mail to one another. It really makes me happy to see so many people making friends across the world and receiving beautiful mail through the post!
Anyway, I was talking to one of the members of the group a week or so ago who inspired me to write a series of blogs on the subject, and I felt that a good starting point was “why you need a pen pal!” It’s such a dying art form these days, writing letters. It’s not common for people to put pen to paper in the digital age. So why do it?
If you’re a stationary fiend, just like I am with my mountains of journals, writing letters is an excuse to lay your hands on more beautiful paper. And there’s some stunning writing sets out there. Paperchase is my “go-to” but you can get plenty of beautiful sets from Amazon, TK Maxx and beyond!
Time away from screens.
In a day where we are glued to the screens of laptops, TV’s, phones and tablets, there’s something really relaxing about switching all that stuff off, and it being just you, a piece of paper and a pen. I feel like I’m living right in the present, and being absolutely mindful when I’m writing a letter.
You make a new friend.
How much fun is it getting to know someone new? Through the joy of both sending someone a letter and receiving one back, you also get to know a whole new person! You may even find that it opens opportunities to go and visit a new part of the country, or even the world. It doesn’t just have to be words on a piece of paper
You can get really creative with the letter. You can make it look beautiful. You can personalise it. You can even include a gift! If you want to keep it to the price of a stamp, different tea bags can be good (who doesn’t love a good brew whilst they either read a letter, or write back?). Post cards with inspirational words on might be included or photos of your favourite things, places or people, which can help to paint the picture of your life.
Local delicacy’s can be included too, although this might increase the cost of sending a little. This brings me nicely on to…
Sure, postage stamps aren’t as cheap as they used to be (I remember getting a 2nd class stamp for about 18p with my first pen pal as a child), but the price is still totally affordable. The only thing you need to be rich in, is time.
It’s difficult to be impersonal in a letter. When writing by hand, you’re more likely to write informally in comparison to typing. We type emails out at work all day long, so putting pen to paper breaks us from our usual habits. We pour a bit of a soul into the written word in comparison to when we express ourselves electronically.
You can keep them
I’ve not saved a text message since the guy I fancied sent me one that gave me butterflies when I was about 15. Text messages are so transactional I don’t want to keep them anyway. But letters. Someone has put their time, thought and effort into that. Even if I wanted to, I can’t put handwritten letters in the bin. I still have letters that I shared with my friends when I was a teenager, and that attachment to a letter hasn’t changed at all.
If you write a letter, you’ll probably get one back!
And it will be a lovely suprise when it arrives. It will make your day. And guess what?
You get to make someone else’s day!
What better feeling than knowing that you have been the part of the day that made someone smile. They may have had a rubbish day at work (or they may have had a brilliant one), but coming home to your letter, might just be the thing that makes it.