Accepting my new reality

So, in my last post I let you all know I had finally made a break through with my Neurologist and was finally being listened to.

Since then there’s been good and some bad news.

My MRI shows there’s no new lesions and no active lesions 🙌🏻 shows Tysabri is a complete miracle.

At the start of February I travelled to Southmead Hospital in Bristol to see a specialist in CRION, I was optimistic but kept a hold on reality that they may not provide answers I wanted. It turns out I don’t have CRION, and I am just part of the small % that doesn’t recover from Optic Neuritis. However, with the information I was given about CRION treatment, MS really is “better the devil you know”.

So what now?

Well now, I can fully move on with my life. Instead of digging my heels in the mud and refusing to accept my new reality.

I’ve began researching natural remedies for inflammation and pain and have been incredibly surprised by the results I’ve already experienced.

I started taking CBD capsules at the start of the year. There’s a lot of opinion on CBD however my own is that it really is incredible.

Before taking it, I was getting through at least 2 packets of Ibuprofen a week and taking strong Cocodamol twice a day. However since taking it CBD, the times I’ve needed prescription painkillers has reduced dramatically.

I believe prescription painkillers are dangerous, they’re addictive and over use can lead to other health problems.

I’ve recently started Tumeric after a discussion with some knowledgeable guys who know their stuff about the natural approach.

Tumeric is amazing and has so many health benefits. For MS it’s a game changer for inflammation, which causes most of aches and pains we deal with daily. As I say Tumeric is a recent discovery in my exploration of natural remedies so I’ll keep you posted on how I find it.

So after 2 years since diagnosis, I’m finally accepting this disease is something I have, not something I am. Which is a milestone for me. I can finally take control of the situation instead of letting it rule me.

2019, so far has been a very liberating experience!

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Which chronic disease is best?

Safe to say – I am rubbish at writing blogs in a timely manner!

So what’s been happening…

So I’ve already bored you with my moaning about my constant eye pain ( 2 years on it’s still hanging on!)

I went to numerous appointments with the MS nurses and kept being told “I’m sorry, you’re part of the small % that doesn’t recover”

Well I wasn’t having it. I knew it was more than MS, so I persisted and I badgered. A couple of weeks ago I finally had an appointment with my neurologist and it was one of the best appointments since this mess started.

I’d done some research before my appointment and read page after page of studies on a disease called Chronic Relapsing Inflammatory Optic Neuritis (CRION)

The symptoms shouted familiarity at me – I called them aloud to my hubby and he stopped dead at how these symptoms were what I was experiencing on a daily basis.

CRION, is in essence what it says on the tin. Optic neuritis that happens over and over. It is difficult to diagnose, but there are markers in the banding from a spinal tap – which I also have, and they were surprised/ puzzled by when the results came in.

So I presented this theory to my neurologist, and to my surprise he said ” I agree you’re symptoms aren’t normal for MS induced Optic Neuritis and I think you’re onto something!”

I’m not ashamed to say it did make me emotional, the relief that I was finally being listened to, that I wasn’t being made to feel that I was being awkward and fighting my MS diagnosis.

So now I’m due more MRIs and more appointments with more specialists, it has made me think…

I’m not disputing I have MS from the MRI results,but it could be that the onset of Optic Neuritis just uncovered the MS and I have both. Can my body sustain the treatment for both diseases.

Or could the best outcome become reality,they have mis diagnosed me. I don’t have MS at all.

Hopefully I have answers for you all sooner rather than later

XO

6 months later…

So my last post was February, I’ve been busy so writing wasn’t high on my list.

So let’s catch up!

In my last post I talked about Tysabri, I mentioned that initially they told me I couldn’t get pregnant on it, or even think about it and then changed their minds a month later.

Well they have made a U-turn (again). So a couple of months ago, there was a possibility I was pregnant. I went to my appointment, and mentioned it to my nurse.

They advised they wouldn’t give me my treatment that day due to it. After a few discussions with a couple of the MS nurses it turns out they now don’t deem it safe, and my Neurologist would have to put across a good case for them to continue treatment if I ever am pregnant 🙄

But me and the hubs will cross that bridge if we come to it.

I’ve also discovered a new side effect – muscle cramps. Not fun! I don’t know how or why it causes this but it just seems to be in my legs, but thanks to the lovely tysabri group on Facebook; Magnesium oil spray is now a permanent fixture on the bedside table. It is a god send for tight muscles, also magnesium salts in a bath is heavenly!

So what else?

Currently I’m studying to become a qualified Mortgage Advisor. Honestly, it’s probably the most difficult thing I’ve done so far in my life! I don’t think my brain is big enough to hold all the information needed! However I have passed the first exam 🎉

Just 2 more to go!

After recently getting my hair off with all the work involved and wanting to pack it in, give up, my husband gave me the best pep talk.

He said “right. Why CAN’T you? What outside factor is stopping you? Because if there isn’t one, it’s not that you CAN’T – it’s that you WON’T”

That struck a cord with me. It’s true. I can do this studying, I can pass – I just have to change my mindset.

And that goes for my mindset since I got diagnosed.

It was very easy to say “I can’t do this, I can’t go there…because I have MS”

Well that’s bullshit. A poor excuse. I can go out, I can have fun, I can drink, I can do all the things I used to do.

It’s just a case of adapting how you do things.

Multiple Sclerosis doesn’t mean your life is over. It doesn’t mean you have to hide yourself away.

You can still be you, you can still enjoy all the things you used to. You can adapt.

❤️

Tysabri – Miracle or Menace?

I haven’t wrote in a while, life gets hectic and I’ve got bogged down with a pity party!

So here I am trying to dust myself off and let you into the experience of Tysabri.

It’s the most effective “treatment” out there for Relapsing-Remitting MS – at the moment. Every 4 weeks like clockwork I toddle down to the hospital and sit for 2 hours. First hour of having the infusion and the second just to make sure I don’t have some weird reaction….which thinking about it baffles me. If it has been approved by the powers that be, why do they need that sort of monitoring period after every session 🤔 (I’ll look into this later!)

So generally you’re offered Ty if you haven’t made progress with any of the other Drug Therapies or you have highly active MS. Which is why I was placed on it soon after diagnosis.

The experience is actually quite relaxing, you just sit for two hours with a group of other MS patients, and it’s nice to know you’re not alone in this. But also to sit and just read a book with headphones in, depending on my mood!

It’s essentially meant to slow the progress of the disease and prevent relapses. Since starting I haven’t had a single relapse 🎉 – which is a miracle, as I had 3 in a very short space.

However there are downsides to this treatment….

A massive risk is PML – brain damage.

Now this is caused by a virus lying dormant in your system which Ty can “activate” – you are tested before and throughout treatment and are allowed to continue treatment for a period of time if you test positive.

I was also told by my Neuro that I wouldn’t be able to get pregnant on this, and would need to have halted treatment 3 months prior to even trying. A month later however he retracted this, advising that it is safe to have throughout pregnancy and is now recommended 🤷‍♀️ They’re a fickle lot!

Then the side effects 😖

So the first round in treatment, I felt great! However since then, for the 5 days following, I feel awful.

Headaches, tiredness/fatigue, muscle aches. Now, the medical staff will argue that it will cause a headache the day of infusion, but anything after that isn’t related to treatment. They however, aren’t the ones receiving it, or putting up with the aftermath so I beg to differ.

So is this drug therapy a miracle or a menace? Or is it just a combination?

I mean having a disease that no one understands is ever going to be easy sailing. I’m hoping my other Tysabri Heroes are right, and it just takes time for the body to adjust to it. Even if it doesn’t, it’s a matter of weighing up relapses against a few aches and pains.

So for now (begrudgingly) Tysabri is my miracle, helping me lead a pretty much normal life until they find a cure 🤞🏻

The show must go on!

So…here I am, a year since it all began.

This last week, I haven’t been myself. Looking back on this year, breaks my heart but fills me with determination 💪🏻

Laying it all out, this diagnosis has pushed me into a depression I never thought possible. I couldn’t shake the feeling that this was unbelievably unfair. I’m only 27, I was in the midst of planning my wedding and looking forward to starting my own family. This news, shattered those dreams around me.

A lot of the Multiple Sclerosis charities, talk about it as a grieving process. It’s exactly that – to a point. You are grieving how your life used to be, you’re grieving who you used to be. The stages of bereavement grief is exactly the same:

Shock – for me, this was – it can’t be. Me? Really? How? – this was very quickly followed by denial ( within hours)

Denial – I sat at this stage for quite a while. Mainly this was caused to the Doctors hanging on to the possibility of it being Lyme Disease, it caused me to cling to this.

Anger – This stage was intense. I was angry at life. I was angry this had happened to me , I had gone through enough shit already. I didn’t deserve this.

Bargaining – * I think I skipped this stage*

Depression – Anger and depression mixed together into something very dark for me. Some days, more than I care to count, I didn’t think I wanted to live my life like this. Feeling like a burden to loved ones, the fact I knew this would only get worse but not knowing exactly how, the possibility of being in a wheelchair and other extreme changes. The same question kept coming back…”Is this really the life you want to have?”

Acceptance – This has only come on in the last couple of months. This maybe due to the anti depressants, or it may be that they’ve just helped me think clearly and rationally. Reaching out for help about my depression was the best step I took in all this. Some people don’t like the thought of anti depressants, but I honestly don’t know where I’d be without them.

It’s helped me realise this isn’t a death sentence. “It could be worse” a lot worse. Yes it’s shitty at times and I’m sure there’s more to come BUT something my step dad said to me, who has debilitating arthritis sticks with me ” It only happens to people who have the strength to cope with it” it’s holding onto these thoughts that keep me going, I can cope with this, I will cope with this. Multiple Sclerosis doesn’t mean your life is over.

In some ways this has been the best year of my life too. In May I got married to the most amazing man I could ever wish for through this. He pushes me when I don’t want to go on, he doesn’t bubble wrap me or treat me any differently. I have a 5 year old step son, inherited 2 sisters ( when your the only girl with 2 older brothers, this is amazing!) I have another wonderful family and I’m now I’m planning of starting my own family after all!

Next time… Tysabri infusions…exciting stuff!

Lights out…

So a year ago is where my MS journey really began…shit got real!

On a Tuesday I noticed a smudge in my vision in my right eye. Like if you get a smudge on your glasses, which incidentally was what I thought it was..

I woke up on the Friday and my right eye was in complete darkness.

Going to A&E was scary, the Doctors had no clue what was happening, sending me to another hospital to wait for a few more hours..who again had no idea.

The weeks after, I spent more time in hospital waiting areas than with my family.

It was confusing and frustrating as the Drs had no idea what was happening…talks of Lyme disease – looking back I wish it was that.

Finally on 6th January 2017, after an MRI scan with Neurologists, I got the news I was dreading…”we’re pretty certain it’s Multiple Sclerosis”

Happy New Year 😳

MS and Me

Hey, I’m Carly, 27 and this is to follow my progress from diagnosis of Multiple Sclerosis. I’ll cover my highs and lows, also the new research that has caught my interest, that will hopefully lead to a cure of this lifelong, chronic disease.

Firstly, I’ll explain what Multiple Sclerosis (MS) is….

Effectively, it is your own body attacking your brain and Central nervous system. The immune system, believes the coating around the nerves in your brain are a risk to the body so attacks them. This can cause a lot of problems with walking, fatigue, eye sight. There are different stages within Multiple Sclerosis, I have Relapsing – Remitting. This means I will have a “relapse” like loss of eye sight, it will then subside but will leave damage behind each time. A common result is burning, tingling feeling on the skin, which was my first real relapse.

It is scary, when you have a constant “sun burnt” feeling down one side of your body, and when getting into a warm bath that side feels cold!

As you can imagine, I freaked! After a week or so it disappeared so I thought nothing more of it…until a few months later when I lost my sight in my right eye.

I’ll give you that juicy story in my next post

XO