Thursday, 7 August 2014

MS/Another Thing Drama.

I was meant to write this blog as soon as I was home from hospital. 
The problem was, I just couldn’t find the words to describe what was happening. Everything was and still is, up in the air. I’ve been lost in a state of ‘the great unknown’ and my mind lately has resembled the old BBC test card.

Testcard_F

I guess a good place to start is what actually happened? 

I’ve had a pretty horrific MS relapse. It started out pretty normal, but I had to stop my steroid treatment as my annual MRI was coming up. I tried my absolute best to keep going without the steroids. My sight was already better and I just kept very quiet trying to rest as much as possible. But then my MRI was rescheduled and pushed back another 2 weeks. It was hell, and 4 days before my MRI after speaking with my nurse we decided it was best that I start the steroids again because as it stood there was no way I could even make the appointment in Southampton. At this time my walking and weight bearing was bad. I was on both crutches but really struggling to keep myself up. I was falling and collapsing left right and centre too. 
I made the appointment, even though on the ferry over I had a phone call from them saying both machines had broken and they would have to reschedule. After telling them I was already on my way they said I could sit and wait, but luckily just as I arrived the engineers had got one of the machines working, and I was seen straight away. 

A few days later although my sight was 99% back my body gave up. And I mean really gave up. Suddenly not only was I unable to walk but I wasn’t even able to stand. I called my GP and they came out to my house straight away, before I knew it I was in an ambulance on the way to hospital. 

After a brief spell in A&E I was transferred to MAU where I told them about what my consultant had said to me a month prior. She mentioned the new treatment Campath as we’re querying whether or not Tysabri is really working for me. When I next relapsed she would try and admit me to Southampton, investigate and go from there. While I was there I was trying to keep in touch with my consultant but there is no signal at all. My nurse came to the rescue and at 6am one morning managed to pass on my consultant’s number. Later that day a bed became available in Southampton and off I went by ambulance (just missing a trip by helicopter which I was actually pretty miffed about). 

I was there for nearly 2 weeks, and it wasn’t a nice experience but we did find a lot out. Well kind of. 

I saw my consultant and she ordered numerous different tests. Very calmly she explained that my symptoms suggest that it’s something and not necessarily just my MS playing around here and that she wanted me to see Rheumatology urgently. When you have one inflammatory disease it makes you prone to getting others. My hip X-ray was done that night and I also finally had a spinal MRI a few days later which showed what I knew all along, that I have lesions on my spine as well as my brain. When my consultant saw me again she told me that two of the lesions on my brain have actually shrunk so wants me to stay on Tysabri for the time being. The rest of the tests weren’t able to be done and it was agreed that I would have them as an outpatient or I would still be in hospital and rehab right now. 

Untitled
I really didn’t want to go to rehab. I would have been more isolated than if I was in hospital. Thankfully by then my steroids had really started to kick in (It can take about 2 weeks to feel the full effect) and with that in mind I decided to push myself to get out of my wheelchair and learn to walk again. By the 4th day of trying I was waddling without any aid what so ever. I told everyone I would walk out on discharge and nothing was going to stop me. 

They let me go home and things have really been a struggle. I’m finding that as the steroids are going out of my system now the worse I’m getting again. My walking is rapidly going down hill and the pain is horrific. I’ve had my appointments through, evoked potentials are next week in Southampton and as for Rheumatology after they told me the earliest the can do is the 30th of September my nurse kicked off and suddenly I’m now being seen tomorrow. She is also putting other things into place for me including a care manager and pushing my wheelchair assessment to be done ASAP. From what everyone is telling me, they think I have rheumatoid arthritis. It’s not definite, it could be other things which they will also test for, but this is the route they’re concentrating on right now. The more I think about it the more it would make sense. I can’t remember a time when I wasn’t in pain with my joints, even as a child but it was always put down to ‘growing pains’. I had to pack in PE in year 6 because of it. Since I have been diagnosed with MS I put it down to that, but my MS has never exactly been normal and this would explain it. 

As I sit here right now it feels like my hips, ankles, wrists and fingers are all being stabbed. I’m exhausted with it. 


Anyway my heads gone blank again, so I shall leave you with a couple of vlogs from my hospital stay and some MRI images.

  UntitledUntitled

Monday, 23 June 2014

Something We've Been Working On

I've been hiding under a rock lately, but that doesn't mean I've not had fun whilst doing it. 


May I present to you, Northern Breaking Bad (a Breaking Bad parody)


Sunday, 20 April 2014

Progress Pictures Update

I still haven't got back to my Christmas weight, and I have lost a LOT of muscle because I've been so sick but I still wanted to share these progress pics with you :)

Untitled

Friday, 11 April 2014

Another Infection Induced Relapse

It had to happen. I was expecting it. 

To be honest I'm amazed at how long my body fought it off for, but it caught up.
I'm still taking comfort though in the fact that this is infection induced, even though they can be nastier. It means that the Tysabri is working.

I'm so exhausted. I'm still exhausted from the norovirus and I've no where near caught up with myself from it. Now I feel like a building has collapsed on me. I'm so stiff I'm struggling to move, so painful I'm in tears and still have terrible terrible nausea. I'm having to really force myself to eat but it's so hard. I don't have the energy to stand let alone cook, as long as Dyllan is fed and happy that's all I'm really aiming for in the day. I've just tried to force a sub down me and couldn't even get half way through a 6". Very, very unlike Jaimie.

Needless to say, all that weight I gained has disappeared and yesterday I was shocked to find myself fitting into a size 26" waist jeans. That's 6" down from before the norovirus hit me. I have no desire whatsoever in weighing myself until this is stable.

All I'm desperate for right now is to be comfortable for 5mins.

Stress hasn't been helping much either. On Tuesday my bathroom turned into Niagara Falls and it came pouring through my kitchen and living room. They've had to make patch repairs that were finally done today until they can sort out an entire new bathroom. Yay I guess.

Anyway that's all I can really say right now. I'll check back in when I'm feeling a bit better.

Blessings x

Sunday, 6 April 2014

Thursday, 3 April 2014

Friday, 28 March 2014

How To Be Sick When You're Already Sick

This week my body outdid itself and I went down with the Norovirus for the 2nd time this month.
Your average person usually won't contract it again within 3 months but MS + a treatment that is an immunosuppressant like Tysabri leaves you more than vulnerable. 

My local hospital is currently on lockdown because of it, and the first time around I managed it quite well, but I had more going out than I had coming in and my body was starting to dry out. I needed some advice and the local helpline said I had to talk to my GP ASAP. Luckily I did and they knew as well as I did that if I was admitted to hospital with this there was the very real chance of me not coming out again for months (or worst case scenario not at all). I've managed to stay out of hospital.

This virus is a bastard even for a healthy person. 

But how on earth do you cope when you're already sick in the first place? 
It's not easy.

A simple sniffle can hit MSers like full blown flu, so dealing with this bullshit is a whole new tournament. Here a few things that have helped me "exist" the past few days.

Anti-emetics

I take a lot of Ondansetron for my usual MS nausea. These medications really do work miracles but I couldn't keep them down at all. Thankfully, you can get it in a gum soluble tablet. Just stick it high up between your lip and gum and let it dissolve. Much easier. They have never taken this nausea away completely but they still help a lot. 

Throat Lozenges

With all of the retching you will rip your throat to shreds. Try and find some with an antiseptic in them like Strepsils.  

A Bedside Station

Everything you think might possibly help belongs next to you. Extra water, tissues, medication, phones, bucket, lip balm, hair ties, handheld fan for hot flushes and so forth. The number for a priest might help too. 

Wet Wipes

I haven't even been able to get into my shower let alone had the energy to scrub down. When you can hardly move from pain, weakness and sickness you will suddenly realise that wet wipes are gifts from heaven. Just wipe down with a nice fresh scented tissue of the gods and you feel so much better. I've been using my Nivea facial cleansing wipes to keep fresh.

Microwave Meals

Family life doesn't stop, and if you've got small mouths to feed you need something superfast, minimal clean up and something that you're not going to be thinking about for too long in fear of throwing up for the 99th time that afternoon. Microwave meals aren't what they used to be, and there are plenty around that are healthy. Don't feel guilty, your child's belly will be full until you're back on your feet and that's all that matters. My best advice for this strategy is to stock up on them as soon as you start to feel off, because once this shit is in full swing there's no way in hell you're going to be able to go pick them up. If you don't use them they are always handy to have in the freezer.

Medication Charts

I was confused, hallucinating and generally not on this planet, and without me writing down when I had taken each medication I would have been in real trouble.


I'm not going to make light of it, I have never been this sick in my life. If you're reading this and you have the Norovirus my heart goes out to you and I hope your body deals with it better than mine did. Everything I've just said is going to mean jack shit when you're feeling at your worst, but for the times surrounding that we have to do what we can. The most important thing is to just try and sip fluids, easier said than done when you can't keep it down but if you have not passed urine for more than 12 hours you need to get your ass to A&E. 

When you reach the otherside of this hell, I'm sorry but there is going to come a time when you have to go out the house. Comfort is key, think leggings and jumpers. You will probably be rocking some deathly shades on your face, for that the only answer is Laura Mercier's Tinted Moisturiser. Don't bother with brushes or sponges, just rub it into your skin like a regular moisturiser to bring some colour back to your poor face. 

Another thing is make sure you never feel like you HAVE to eat. The human body can survive without food for a few days, just concentrate on your fluid intake. 

Don't try and be a hero. This is nasty, nasty stuff.

Blessings x


Monday, 24 March 2014

Stopping Amitriptyline - Update


I feel like this is a good background track for this post!




- First of all I would like to say that I am not a doctor. 
Everything that I write about my medical issues is based on my own personal experience unless stated with proof of research articles etc.
As with everything on the internet like this, you have to reach your own conclusions.
Everyone's body is different and will respond to medical treatment or behave in a different way. What works for me may not work for you.
I will always stress the fact that you must seek professional advice when it comes to medical matters. 
I'm just here to share my experiences. -





As of last night I am now completely off Amitriptyline. Of course it's still in my body and will take a couple of weeks to be flushed out entirely. But, I can hand on my heart say that I am feeling really great. 
I haven't had a single hot flush today, which alone has put me on a real high. 
Until you've experienced major hot flushes every 40mins that make you feel so rough you're physically sick then you have no idea of how much it effects you mentally as well as physically.
I'm sleeping so much better. I still wake from discomfort occasionally through the night but it's nothing to me now. (The cat does still wake me randomly. I've come to the conclusion she is having some major lucid cat dreams induced by the extortionate consumption of organic catnip that no matter how well I hide it still ends up all over my floor suspiciously.)

The other horrid symptoms are all either gone or nearly gone. I'm able to get out of the house a lot more now that I don't find myself chained to the toilet, and I'm feeling so much lighter and less sluggish. My walking is still a little off, but I feel stronger to cope with it and I'm able to successfully rebalance myself more than before. It's still hard, I'm not going to lie. Every single step is calculated and executed with extreme concentration. But, that's just me tbh. Something as an MSer you just get used to. 

My performance in the gym is up almost 100% and I feel like I'm on fire. OK I'm still quite pathetic compared to your average healthy person's abilities but hey, sod it.
I'm impressing myself and my PT every single day and my god does it hurt, it hurts so so freaking much but I still smile and laugh with it. I'm having fun, and with every single rep I smash yet another goal. 

(You know what isn't fun? Having a B12 jab into really tense muscles after the gym.)

Speaking of B12 I feel like that's also making a huge difference to my energy levels, perking me up a bit in the process. They're definitely making up for the Vit. D that I've had to halve. I was doing brilliantly on it but suddenly it reached a toxic level in my body so we had to bring it right down. I'm having to have them every other day until my Dr says she's happy with my bloods. 

As for my mood? Well apart from being so busy with a million and one things to do I'm feeling great. I feel like I'm just at the start of a permanent high. Everything is going up and showing no signs of stopping. I'm so grateful for everyone around me at the moment, I want to hug everyone. My friends, my PT, the guy who owns my gym, my doctors, my nurses, my consultants, the guy in Subway who knows my order, the old guys in Costa early in the morning who always say hi and compliment me, the apple sales assistants, my neighbours, my car salesman, everyone!

Dyllan has also been amazing lately. He's turned into a real little gentleman. Well behaved, polite, doing brilliantly at school, he's perfect. Even if he does say that Mummy has "M&S".

Oh and I have no idea if I've lost anymore weight, I've been far too happy to even think about scales ;)

Blessings x



Saturday, 22 March 2014

Jaimie Got Fat. Thanks Amitriptyline.

Something didn't make sense.

Unless it's a special occasion I stick religiously to no more than 1500cals a day.

Yes my gym attendance had been crap, but that was only because my MS symptoms were just too much.

My clothes were getting tighter.

I had put on an entire stone in weight since Christmas. 

So I told my GP, she knew I wasn't one to just let weight pile back on, and she agreed that something was wrong. 

We eliminated possibilities. Pregnancy, bloodwork, other medications.

She then reminded me how the past couple of times I had seen her I had said that I had some new - what I thought was - MS symptoms. 

She asked me to list them all again and she wrote them down:

Fatigue worsening
Blurred vision
Itchy skin
Constant urge to pee even on an empty bladder
Bouts of rapid heart rate even after stopping Adalat
Unbearable hot flushes
Excessive sweating
Hair loss
And of course the sudden weight gain

She double checked her screen, and then calmly told me that all of these symptoms are side effects from the Amitriptyline that I was taking. 
She said that it was ultimately my decision, but her advice would be to wean off. 

I was suddenly petrified. This medication really helped me get over my breakdown at Christmas.
But I thought about it, weighed up all the options and within a few hours I realised that coming off was the best option. I couldn't say that it was helping me sleep anymore because I was waking all through the night with the hot flushes. And this was never going to be a long term solution anyway. Nope, time to come off. 
That night I went through another sleepless hell, so the next day I decided to immediately halve my dose, 100mg to 50mg. Drastic and a bit fast, but I can't cope with these side effects anymore. The withdrawal I might have will be nothing compared. 

I've been on the half dose for 3 nights now and I'm already seeing a change. I never realised just how drowsy it was making me, I thought I was just more fatigued from the MS. The drowsiness now isn't even half of what it was before. This might be because I'm also sleeping better, now only waking a few times with a hot flush or discomfort.
The day time awfully hot flushes have reduced to a handful, where as before they were every 40mins-1hr.
The constant urge to pee has almost disappeared.
I've even lost a couple of lbs in just 3 days. 

So now that things are under control and positive I now have to really step up my game to get my weight back to where it was at Christmas. 
I know that the weight will drop off me quickly, but I've lost 3 months training because of this crap. Obviously I'm going to be careful but that doesn't mean this body of mine will get an easy ride. 
I just have to keep reminding myself of how lucky I am. If I hadn't been controlling my calorie intake, god knows what size I would be right now. 

Blessings x


Tuesday, 11 March 2014

On My Way

I'm still here! 

I have had a terrible few weeks if I'm being honest. My laptop has decided it's had enough so I've been MIA for a while. On top of all of that I have been under so much stress and my MS is just...ugh.

I have no idea what my body is doing at the best of times but lately I've felt really strange. 
The good news is that all problems are in hand and being sorted, but it's almost as if my mind has got so used to feeling so low about everything, and now that a miracle has happened and everything is being sorted and quite a few of my dreams are about to come true, I still feel low about it all.
I have been trying to train my mind to get used to the idea of all the positive things happening and it's getting better so it's working. I'm also in shock to tell you the truth. Complete shock that all of these really heavy problems are being waved away. Like I said, a miracle. 

As for my MS well it's a bitch still. My pain hasn't changed and I'm able to just about manage it, but all the other stupid niggly symptoms are going nuts. I'm finding it very difficult to walk lately, but it's nothing to do with my leg strength and being able to hold myself up, it's the walking itself. I'm stumbling and waddling all over the place - the typical 'she's not sick she's drunk' scenario. If I try and walk with my crutches it's even worse and I end up falling over the crutches. I'm feeling weird all over really. My tremors have been quite bad and my cognitive functions are backfiring. 
Because of all this I've been quite frightened to go to the gym, I haven't been in a month and it's killing me but I just don't know what my body is playing at and until I'm confident I can't risk it. 
I've been so stiff and tired, with nausea 24/7 I've struggled to keep myself going. I'm only just about managing to look after myself, Dyllan and the house so I must force myself to sit back and rest. 

During the coming weeks I have so much exciting and positive things happening it's unreal. I feel like pinching myself to make sure I'm not dreaming. Thinking ahead takes my mind away for a while to concentrate on happy and positive things. I should use this resting time wisely as I'm probably not even going to have the time to think when everything comes together. 
I have a lot of things to meditate on and plans to be made. I just don't know where to start! 

This is the calm before the storm. An extremely positive storm.
So sod you MS and your stupid niggles, I've got stuff to do!

Blessings x

Tuesday, 18 February 2014

COMING SOON - THE PROMIXX VORTEX MIXER 2.0!

If you thought the PROMiXX Vortex Mixer was cool, you're in for some amazing news.

The wonderfully clever people at PROMiXX have just out done themselves and announced that the PROMiXX Vortex Mixer 2.0 is on it's way
I for one, am quite excited at this news.

The Original PROMiXX Vortex Mixer features a scientifically engineered blunt blade specifically designed to protect the integrity of the micronutrients in your food supplements. The motor is fully and easily detachable and it even had a 100% leak proof sports cap, perfect for when you are on the go! (How annoying is it when no matter how tight you put caps on regular mixers, it still goes everywhere!?) 

So how exactly do you make something that is already awesome, even better? 

How about adding an integrated storage system for up to 100g of your supplements?
Or even make it with durable and aesthetic brushed aluminium?
You know what would be really cool, a Lithium-ion battery AND a USB charging cable.  

Well you've got it. 

3a945154a569cb4ea8b03c52d94ecb73_large

Be one of the first to get your hands on this amazing piece of kit, head on over to their Kickstarter page and if you pledge $40 or more you will receive a PROMiXX Vortex Mixer 2.0 before anyone else!
Come and join the revolution and be part of something cool.

The estimated release is May 2014 and I can assure you as soon as I can get my mitts on one I will do a very thorough review. 

If you can't wait and want to try the Original PROMiXX Vortex Mixer then you can purchase them here at Alpha Nutrition.

Wednesday, 12 February 2014

Heart Problems Solved (Hopefully)

In my last post I mentioned how my heart has been playing silly buggers, and I put it down to my MS. I Promised my nurses I would talk to my GP about it and yesterday I did. 

She gave me good news and kind of bad news. 

The good news is she is pretty certain that it's all being caused by the dose of my circulation tablets being far too high for me and my very low blood pressure. How I hadn't fainted at all I don't know. But all I need is to lower the dosage of the circulation tablets and my heart will level itself out. The bad news is that I'm on complete rest for a couple of weeks until my body adjusts itself. I know it's not really bad news but it means sulking on the sofa for a fortnight while pining for the gym. Something that I focus on and I use to fight back at my MS and all of life's other worries. 

Oh well. 

Blessings x

Sunday, 9 February 2014

Friday, 7 February 2014

MS And Tysabri Latest - Musings. Annoying, Painful Musings.

-
I wrote this on the ferry to my infusion this past Tuesday
-

"I don't know what my MS is playing at lately. 

My symptoms are going nuts, along with old ones flaring up and even new ones making an appearance. It's making life very tricky for me. New symptoms sometimes means new lesions on the brain but I'm forgetting that thought, telling myself that they were all there before and just deciding to flare up now. 
There's no doubt about it, my MS is getting worse. Much worse. My Doctors and nurses are all aware and are all nodding at Secondary Progressive. But the fact that I have new symptoms and I'm getting much worse brings my Tysabri treatment into question - Whether it's working or not. 
I've had to be very careful what I share with them in fear that they might stop my treatment, as it's not licensed in the UK to treat Secondary Progressive MS. I chatted with one of the nurses about my fears at my last infusion and she told me that they look at it on a case by case basis and I could still be allowed the treatment. All MS gets worse eventually, but it's about slowing it down. Some people thrive on Tysabri and improve, never relapsing again. 
There's no doubt it's working for me. Before I started this treatment I was relapsing over and over. Now after being on it a year I have only relapsed twice. One of which wasn't even a 'true' relapse as it was triggered by infection, the other was at the start of my treatment. 
I've given it a lot of thought lately, perhaps it's time to be honest and not just with my Doctors but with myself too. I kid myself every day about it, telling myself I'm fine. 
But it's only so long I can pretend that I don't need my crutches every other day. 
People close to me have even noticed that I'm getting worse. My heart races in my throat and I'm exhausted suddenly just sat down doing nothing. I dread to think of having one of these episodes when I'm walking around in public as I will fall (not that falling everywhere isn't exactly uncommon) and stress putting even more strain on my heart. Working out? Jesus if I had this while on an elliptical I'd probably end up in a wheelchair. I'm stumbling all over the place, yesterday I even fell backwards twice when I was just standing still folding washing. 
It's starting to get a bit much. Maybe I should tell the truth. I can't keep blaming all of this on stress."

 Well I did it. I told them everything. What my body was doing, how I felt, and all of my fears. My nurse as always was brilliant, putting me completely at ease but we agreed that it's all got to be forwarded to my drug consultant. She is the treatment boss, who decides yes or no.
I feel so much better for sharing it and getting it all off of my chest. 
Some people do go through bad patches of MS and then a couple of years pass and they get a lot better. It's all about phases. And it is still early days on Tysabri, I've been on it a whole year now! The bottom line of it all is that this treatment is doing something positive for me. In my heart I do feel like I'm just in a low phase. Problem is, if there is a hiccup I could stay in the low phase and plummet. 

But we don't think about these things. We just keep going. It's ok to paint on a smile every now and then. The most important thing is to listen to your body, share what you can, accept help and keep positive. Our bodies are breaking apart. Life for us is like the sea, crashing into crumbling cliffs, ripping them down. Our cliffs may fall into the sea, but our souls still stand. 

So let your soul do the smiling for a change :)


Blessings x

Sunday, 2 February 2014

Jaimie Goes Vegan! - An MS Challenge



My latest experiment to see how and if a vegan diet does anything to help my symptoms!

Leave a comment if you yourself find a special diet helps your MS. 
Information and other people's experiences is crucial to finding something that if you try it, might work for you :) 

Saturday, 1 February 2014

All I Need's A Little Time



Gosh it's really blowing a hooley outside. The rain against my bedroom window is almost deafening. How horrid. 
The weather lately as a whole has been awful and it's certainly not doing my mood any good. Saying that, I can't say that I'm not feeling a little better, and these days have mostly been pushing upwards. 
I have taken a lot of time to myself to just be with 'myself'. I feel almost like I'm evolving in some way, more positive, wiser and creative. Trouble is when you go through transitions like this you have to make a conscious effort to get to know the new you. If you don't you'll find that you're clashing subconsciously with this new person and you'll be stressed without even knowing why. 

Coming out of a breakdown can feel like putting yourself back together like a jigsaw puzzle. Slowly picking up pieces and putting them back in place, with some new shiney ones in there too. You really have to force yourself to just 'be' and get to know yourself. Why? Because you are your closest friend, all the way from your birth til your death. 
The most important thing you can do is to look after yourself. Make time for yourself. Check up on yourself. Even treat yourself to a coffee on a cold, wet and windy day just you and yourself getting to know each other. You never know, what you find may surprise you. Have you ever told yourself to be proud of who you are? Because you should, every day. 

As I said (and I hope I don't jinx it) I'm slowly on the up. These days I'm really just trying to keep myself busy doing things that I enjoy. It means that a lot of things are changing around me, but it's all for the better. Routine and planning are helping a lot, also making me feel a bit more productive. 
Hopefully this should lead to my poor neglected blog being busier, and I've even created a new YouTube channel as my old channel was too miss-matched for my liking. You can find it here: www.youtube.com/islandbeachbunny Videos will be up soon so watch this space. 

Blessings x

75898_10151824620287115_1218955885_n