Spasticity and other lovely symptoms

I've always suffered from spasticity when I've suffered a relapse, but not usually when I'm in remission. Until now. 

Spasticity

But what is spasticity? Spasticity refers to feelings of stiffness and a wide range of involuntary muscle spasms (sustained muscle contractions or sudden movements). It can vary from mild muscle stiffness, to more uncontrollable shaking and spasms. In the past, when I had a relapse, the stiffness would be extreme which would make moving my legs hard, let alone walking. I used to have to hobble about.  

Current symptoms

Recently I've noticed that I've got stiffness in my right leg in my thigh and around my knee. This is making walking difficult, which is a real pain. It's odd getting a new symptom in remission. Maybe it's just something I need to expect since I've had MS for so long.

Or maybe there's another reason. It could be because it's starting to get a bit warmer now, or maybe it's a relapse? 

What is a relapse?

The definition of a relapse on the MS Society website "a relapse is defined by 'the appearance of new symptoms, or the return of old symptoms, for a period of 24 hours or more – in the absence of a change in core body temperature or infection'". Symptoms you have experienced before, or perhaps grown used to dealing with, might appear in a different part of the body.

Now it mentions core temperature, but it certainly hasn't been hot enough for me to really suffer with the heat. I first noticed it when we were on holiday at the beginning on half term, so maybe I've just been overdoing it? 

Mystery pain

However, now I sit down to think about it, I have been suffering from a bad elbow pain over the last 6 weeks. It sounded like tennis elbow when I googled the symptoms, and I've just been waiting for it to get better, but according to another article I've just found it could actually be my MS. It's a real burning pain in the muscle around my elbow and on my arm, and it's very stiff. It's hard to straighten my arm too. I've never had it before and is persistent to say the least. 

The fact that the symptoms are all down the right side of my body, and they are new, leads me to think it may be a mild relapse but luckily I have a phone call with my consultant on Thursday anyway so I can discuss it with him and try and work out what's going on. 

In other news...

We had a great half term. We went to Whitemead Forest Park in the Forest of Dean for a couple of nights and it was loads of fun. I heartily recommend it! I even managed a day at out Birdland nearby in the Cotswolds. Nice to have some quality family time.  

Me and Lib at Birdland

The Overdue Revival of TinglyMum

Hello all!

It's been two years since I last posted something....shock horror!

Since then we've had a worldwide pandemic in the form of Coronavirus and well....hasn't it just been peachy! *rolls eyes*

What an utter s**t show of a year. We've gotten through it though as a family, battened down the hatches, got our heads down and coped with it. Trust me, we know how lucky we are. We're in good health and there's a lot to be said for that. 

This pandemic has made me consider life differently. 

For starters, my health, and the health of my family is the most important thing to me. I've always put the pressure on my self to work despite my health issues, and I'm not really sure why. Because of Si's work, I'm in the lucky position where I don't need to, so I should be ok with that. I think society and the pressure to be 'SuperMum' has done damage. After all, I have it stuck in my head that aside from being a good Mum, I also have to work. Well, enough of that I say! It's taken me a long while, but I've finally come to terms with the fact that my health (and mental health in particular) makes working EXTREMELY hard. 

During lockdown I convinced myself that I needed to work FOR my mental health. I was so scared I was going to become bored, sleep more, and therefore become depressed. I was desperate to give my days some major purpose. So I re-started my vegan cupcake business, called The Natural Cupcake Company to give me some focus once the kids had gone back to school (albeit briefly it turns out!). The business was a success though! I had a good product, the business was selling well, and I finally thought I knew what I wanted to do. 

However, things quickly turned a bit sour. 

I enjoyed it, no doubt, but I could tell it was starting to be a struggle. I started to get stressed and anxious if I got an order in that was last minute, and I HATED delivering around Bristol. I carried on though, and I got steadily busier. I had an extremely busy Christmas and Mother's Day, and then WHAM. That was it. My body had reached it's limit, and I was forced to my bed for a week with a pseudo relapse (a pseudo relapse, is one that mimics an actual relapse, but no damage is occurring in the brain - it's often brought on by stress). I knew it wasn't a full blown relapse because my symptoms, though bad, weren't getting steadily worse, so I phoned the hospital and we agreed to sit it out and see what happens. I'm back to normal now, but the 'relapse' has taken its toll. 

I temporarily closed the business while I was ill, and now I can't bring myself to go back to it. I get really bad anxiety when I have to bake now, which is such a shame. I used to love it. These shadows of bad things that happen still haunt me. And that's what I've come to realise...my mental health plays such a big part in whether or not I can work - not just my MS. I have to aim to keep things balanced, not just for me, but for my friends and family too. Everyone who helps me get through my little ol' life. 

So there you have it. I've tried being a cupcake mogul, and it didn't work out. I have anxiety, bipolar, and MS. Maybe I'm just not cut out for working...and that needs to be A-OK. It dawned on me that maybe the drive to be 'focused' on something, needs to just be reassessed. After all, maybe my 'focus' should be ME. There are things I can do to keep busy, to stop the boredom creeping in, and I think I've finally learnt that keeping as relaxed as possible benefits, not just me, but my whole family. 

Coming out of lockdown, after having both vaccines, I'm philosophical about what life means to me. And how health is the most important thing. I need to shake off this feeling that I need to please all people at all times, and concentrate on being the best I can be for myself and my family. Whether this means investing on getting fit, on eating well, doing yoga, meditation, taking time out to be sociable (something I'm really not very good at), reading a book.....or WRITING (the thing I love to do, but have neglected something chronic), it will all fall into place I'm sure.  

I'm just glad I've climbed out of another MS/anxiety hole again. I had a panic when I was ill this time that I was stepping into 'secondary progressive MS' territory and it scared the hell out of me. It was my 20 year MS 'anniversary' this April just gone, so in the back of my mind I keep thinking....surely it's gonna happen at some point, right? But then.....maybe not. Maybe I'll be lucky. Another good reason to invest in me, stay away from stress, and live well. 

And talking of living well....I became a vegan last year and it suits me. Don't get my wrong...I have the odd slip but overall I'm eating a much better diet and I'm basically on the Swank diet again. My biggest weakness is turning to processed food when I'm tired, but now I'm really going out of my way to avoid it where possible. I definitely notice a difference in symptoms when I eat 'badly' so I've just got to make sure I stick with it. I'm still amazed that after having MS for 20 years, not medical person has ever mentioned that having a good diet could help things. My consultant had never even heard of the Swank diet. But diet is so so important. I mean, it has to be right? It's the fuel we use. 

So despite all the panic and awfulness that's been going on in the world, I feel calm and reassured that as a long term MS sufferer, bipolar nutjob, anxiety whacko, I'm in a very good place right now and my future looks bright. And, my dear readers, I will endeavour to bring you more tales of life, love, motherhood and MS soon!

Me loving life. It was a hot day, and I still 

managed two dog walks....now THAT is progress!

Pseudo-relapse...or not?

No sooner did I think things were looking up, that I start experiencing symptoms again and I suffered a pseudo-relapse that lasted for about a week.

What on earth is a pseudo-relapse?! Well, it's when you have a symptom flare-up which has nothing to do with the course of the disease (ie. no more damage has been done in the brain or spine). They can be caused by all sorts of things - heat, exhaustion, fever, viruses and infection, for example.
I think I probably had a virus because there have been so many bugs that have been floating around our house since the kids started back at school.

Whatever the reason was, my walking was affected (I was dragging my right leg and my knees went stiff), I had dizziness, loss of concentration, fatigue and a lot of stabbing pain in my legs. It wasn't fun.

The MS nurse thought I could actually be having a relapse, but the Tysabri could be holding it at bay. Who knows with these things? If that's true though, then Tysabri is truly a great drug! I do think I was pretty exhausted too though, so that wouldn't have helped. It's been half term, and the kids have been pretty full on. We also had a Halloween party that Lib hosted, but I of course did most of the food. It was fun but tiring, and as usual, I did too much. I didn't want to let her down though, because she'd been looking forward to it for so long. Luckily Sheila and my friends were happy to lend a hand.

Needless to say, things have sorted themselves out now though, and I'm pretty much back to 'normal'.
One thing that helped massively was a little holiday we took to Dorset straight after Halloween. We only stayed for a couple of nights, but a change of scene is always great when you feel poorly, and I loved being near the beach. We explored the Jurassic coast, went fossil hunting on Charmouth beach, and caught up with family. It was great! 
On our first day, we went to Monkey World, and I took my mobility scooter because I couldn't walk that far. It was really cold, and my legs were freezing, but oddly enough it actually helped with my walking afterwards. I guess the cold helped reduce down the inflammation.
Obviously a lot can be said for ice baths and cold showers next time I feel ill!

Back to earth with a bump now though, and the next fun obstacle to overcome is when I head to Harry Potter World with one of my best friends, next Saturday. I've pimped my scooter especially for the occassion (black and sparkly)! I love Harry Potter, and have always wanted to go, so it's going to be brill! I will undoubtedly keep you posted, and my next post will be full of photos of me drinking Butterbeer! So excited :)

 Me at Monkey World....freezing my buns off!

Charmouth beach

Me and Ed on the beach

West Bay - where we stayed

Lib looking very cold!

Sugar and you know...stuff that happened.

I was trying to think of a witty title for the post, but as so much has happened since my last one you got the very succinct title above (at least it's better then urgh, which was my first thought).

Has a lot really happened though? I'm unsure. Having an 11 month old just seems to suck time away from you. It's not long before Ed is 1. Flipping 1! It has gone ridiculously quickly. Everything is just brilliant with him aside from the fact that he's so heavy, so lifting him has been a real issue. Luckily though, just as we really started to struggle he started to crawl, so at least I can now tempt him along instead of have pick him up. You know. Like a dog...or a horse. ;)

The biggest thing on my mind is that I'm due to start disease modifying treatment tomorrow. It's been a drawn out wait, but we are GO for Tecfidera, people! It's an oral drug so 'hurray' for that, and I'm excited to see whether it makes a difference, once the possible side-effects wear off. Apparently it can be pretty horrible, but I've just got to stick it out for 12 weeks when it will a lot better (again, apparently).

I was gearing up for it a few weeks ago though and what happens? Yep indeedy. A relapse. To be honest, I was struggling through it for a long time (as usual going " oh, it's probably just a virus"....until it slaps me around the face like a wet kipper) so actually by the time I went in to get steroids the worst was over. It was my 15th relapse in 15 years, and I'm well aware of the fact that on average it's around year 15 when things start to progress to secondary progressive MS...but I'm trying not to dwell on that. As I'm sat here now though, I am feeling very positive about things. I've made a really good recovery and I think it's mainly down to one thing. Sugar. Or lack of it. 

Ahh sugar. The food of the devil surely? So good, yet so very very bad for me. I have noticed the correlation between me eating refined sugar and the flare up of symptoms for a while, but you know, it tastes nice so I turned a blind eye! However on some days, when you can't eat a yoghurt without your whole head going tingly, it's a bit harder to ignore. So I looked into it, and after finding an interesting article about why sugar is so bad for MS, I decided to try cutting it out, and I am AMAZED by the results. Literally gobsmacked. Normally at this stage of recovery I would still be stiff and suffering from aches and pains and getting tired out really quickly, but I'm doing so well. I feel strong, full of energy (for me!), and the tingles and stiffness have pretty much disappeared (bear in mind that normally, even in remission, I get the tingles after walking)!! I'm sure that the steroids have done a huge amount too, but the combination has really worked and I feel happy that I've done all I can to reduce down the inflammation. 

Again, I think this little morsel of good news deserves it's own post (which I will attempt to do this week), but for now all you need to know is that it's been flipping ace and I feel surprisingly confident and strong enough to deal with starting Tecfidera head on tomorrow. Win Win! I will endeavour to keep you posted. :)

Bad, Chloe. Bad!

Relapse Time

Bit of a short, to-the-point post, but I just don't have the mental capacity at the moment to write anything other! So 5 weeks after giving birth, and finally my body decided that enough was enough. Relapse Number 13 is upon me.

Like last year it started with cerebral symptoms:

• painful headache over right eye which went down face
• total loss of concentration and worse than normal short term memory
• mixing up words in sentences/not being able to think of words/thinking of a word and something completely different coming out instead
• rubbish balance
• lisp
• problems swallowing

Then of course you have the usual 

• stiffness in legs, and tingling/numbness
• exhaustion and fatigue
• tremors in hands, and 
• dizziness
• weakness

For once, I was proactive (instead of my usual wait and see approach) because with Junior here there's that added pressure to get better as quickly as possible. I contacted the MS nurses quickly, and after being seen by my consultant, was able to start on IV steroids within a couple of days. It turned out to be the right decision, because even though steroids don't prevent the relapse from happening, I did feel stronger after day 1 so I think it has helped me to deal with it better. Some symptoms have improved already, and others have become a bit worse, but it's really hard to assess at the moment because it's flipping hot!!! Sod's law. 

So I'm sat here after my last dose, trying to keep cool and rest, trying to shake off this demon of a headache and hope that things really start to improve soon.  I do feel like this is a bit of fresh start in a weird way though. My body has been through so much this year, but knowing that I've had a max dose of steroids to make me as strong as possible is reassuring. I've started back on my supplements, and will be back on Amantadine soon so onwards and upwards, hopefully! 

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On a more practical note, I am so happy I bought this Tommee Tippee machine. It enables me to make bottles up quickly and at the right temperature, upstairs in mine and Junior's room. It's pricey (though normally on special offer), but perfect for any parent with mobility problems who wants to avoid trips up and down the stairs - for me was worth paying for. During the relapse it has been a godsend because it's meant I can have everything to hand so me and Junior can camp out and rest, and the furthest I need to hobble is the bathroom. :)

"Healthy...but days later I couldn't walk"

Yep, the article in Woman magazine is out and it's what I expected (judging by the articles they usually include in there), but it's still a bit disappointing.

Facts have been juggled around and shaped to make it a "better" story, some things over dramatised hugely, and other things are just untrue. It was read out to me before hand, albeit quickly, and as I was listening I kept thinking "ok...that's hyped up, but I can see what you are trying to do" and approved it after insisting on a few changes. However, reading it on the page along with my pictures has made me more critical.

I'm not upset (I used to work for the local paper, and studied Communication Studies, so I'm more than aware of certain journalism practices and what makes something 'newsworthy'). They want to sell magazines and saying that I "studied film" sounds better than "I wanted to study film, but I could never make up my mind in what capacity and finally realised it was going to be an impractical career for someone with MS anyway" or whatever I waffled on about ;). However, that's the truth and what happened. But that's the media, folks.

So why has the whole thing disappointed me, I hear you ask? Well, it was meant to be linked to the MS Trust campaign "Making Sense of MS" (there is a tiny link if you can spot it), and sadly the journalist's assumptions of what MS is has over-shadowed the truth. She said she had no idea of what MS was and the effect it has, and she spoke to an MS sufferer for an hour (admittedly not that long, but we did cover a lot of stuff) and yet still resorted to making out I'm in a wheelchair a lot of the time, because that's what her idea if disability is and it 'sounds better'. It felt like it undermines what suffering from MS is like for me. It's literally like someone has said 'yeah you have it shi*t...but not sh*t enough!'

The fact that it's also written in the 1st person, gives the impression that I wrote the article, and therefore (for anyone who knows me) will make them think I sat there and blatantly lied and over-exaggerated my disability. On the other hand though, the article has also made me sound more competent than I actually am. She obviously wanted a contrast of "one minute in a wheelchair, the next minute fine and able to work in the film industry" or "juggling 5 things at once" which is wrong. It's a daily struggle.

MS doesn't switch off the moment you can get out of the wheelchair after a relapse. Just because I'm walking doesn't mean I'm fine. When I got involved in the campaign they said they wanted to focus on what it was like to be young and diagnosed, and the information and help that was given to me at the time compared with the support you get now. When I was diagnosed, the only two people I knew with MS were permanently in a wheelchair, which gave me a bleak outlook and I wasn't given much information to contradict it because not much was known. With this article, especially by emphasising the wheelchair aspect just for a good story, it doesn't seem much of an improvement. Sure, it's clear that I've managed to raise a happy family (a positive aspect that I know she wanted to focus on) but she hasn't mentioned the amount of support I get and need in order for me to do this, which I made very clear to her. So it's a toss up between giving a false impression that I'm healthier than I am, and yet emphasising the wheelchair and giving a bleaker outlook than is necessary. If I had read this article when I was diagnosed at 18, I would have been pretty confused! 

It's a shame. Like Si said, they obviously have a formula they follow for their articles because they know what their readers like (a bit of drama), and at the end of the day she only had 500 words. At least I have this blog to put some things straight though. It's certainly been an eye-opener, and though I don't regret it, I will perhaps think twice about contributing towards something again. C'est la vie, though eh? :)

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"Say what?!"

(The things written that are untrue/over exaggerations/bullsh*t)

1. I never studied film. I studied a BA in Communication Studies. I originally wanted to do something in film but getting my diagnosis made me 'give up the dream' and be realistic about my options.  Basically I didn't want to put the pressure on myself!

2. I don't get wheelchair bound for months at a time, some sufferers might be, but not me. True, if I'm relapsing and wanted to get out of the house, then yeah I'd probably have to use the chair. However, my MS isn't just about walking. When I'm having a relapse it's a struggle to muster the energy to get downstairs, let alone wash, dress and get ready to go out, whether it's in a chair or not. I hate having to use my chair and would rather not go out. Hence the reason why no one ever sees me in one. Definitely a huge dollop of dramatic license used on this one. 

3. "Simon always jokes that I'm juggling 5 things at once"
Completely made up. Now, if she'd said 'Simon tells me off for trying to juggle 5 things at once' that would have been true! I often con myself into thinking I can do stuff, but then pay the price by being ill for days afterwards (hence there telling off ;)

4. "Just like 'typical' MS..." [Note: this bit was added after I approved the article and I certainly would have made her change it. She obviously got told to add more 'medical facts']
This is the bit that wound me up, and showed her overall lack of understanding. Saying my consultant "explained to me that just like 'typical' MS which affects the nerves in the brain and spinal cord, I would have problems with my movement, balance and vision" isn't true. He didn't say this and wouldn't have done because MS is so varied between sufferers so there's no way of knowing how it will affect you. Obviously dramatic license was used to make it more concise, but saying "like 'typical' MS" gives the impression that having relapsing-remitting MS isn't in some way normal for the condition (like it's a watered down version or something). The way it is worded also makes it sound like having relapsing-remitting MS means you have the symptoms, but not the brain and spinal damage like with 'typical' MS, which of course is not true. The damage is there and scars are left, but it's just that currently my body can do a pretty good job at healing and getting back to some sort of normality, unlike the progressive forms of MS. Relapsing-remitting MS is actually the most common form of the condition (roughly 85-95% of sufferers have RRMS when diagnosed). For a bit more info, you can visit http://www.mssociety.org.uk/what-is-ms/types-of-ms/relapsing-remitting-rrms.

5. "Beta interferon which I'd inject daily, and though it helped...." 
Possibly misunderstood or mis-heard me here, but in reality I tried 3 types of drugs (Avonex, Beta-Interferon, and Copaxone) that were injected either weekly, 3 times a week, or daily. After years of treatment, there was no evidence to show that any of them had helped at all, which was why I came off and had a break. I chose to experiment with the Swank diet instead which I found had a much more positive effect than any of the meds. More info can be found here: http://www.swankmsdiet.org/.

6. "Getting back into film" - this made me laugh! I dabbled in film extra work, and certainly won't be doing any again any time soon because of how much it tired me out, which I explained to her. I do still plan to get into voice-over work when the kids are older, but that's a long way off. The article makes me sound a lot more interesting! :) Truth be told, I'm not going to have the energy to work for a good number of years now until my little peeps are at school. 

and finally....the very worst.

7. I'm 32!! Not 33. The outrage!!!!! ;)

Overall, it did get a positive message across I guess (that I don't let MS control me and I try and live a full life regardless of it) and if it does offer hope to some, then ultimately I'm chuffed.

My advice to all newly diagnosed young people though?

Well, take each day as it comes, and try not to dwell on the future. No-one (whether an MS sufferer or not) can predict what will happen to them, so try and think positively - I know it can be hard. There are so many developments that have been made just in the 14 years that I've had MS (there are now drugs out now that can reduce relapses by almost 70%, as opposed to the standard 20% when I was diagnosed, and there are more effective ones on the horizon), so things are looking up, and being diagnosed doesn't mean a life confined to a wheelchair. You can have a full and happy one; just try and learn to accept having the illness, adapt things so you're not putting too much pressure on yourself and (as my Mum says) "go with the flow". 

More details on the MS Trust 'Making Sense of MS' campaign can be found here: http://www.mstrust.org.uk/help-make-sense-of-ms/

Things wot I have learnt.

It's been a while, my friends. It has been a while.
So much time has passed in fact, and so much has happened, that I don't know where to start.
Therefore, I've decided to not even try and recap. I'll just ramble and see where things take me. Good place to start though is how much I have learnt about myself, and my MS over the last 6 months.

For starters, I'm feeling much much MUCH better since my last post, written during my last relapse. The steroids did their work swiftly, and IV steroids seemed to suit me much better, so that's the first big thing I learnt. No more oral steroids. The side effects are much worse and recovery time is longer.

The second thing I've learnt, is that Amantadine works for me (sadly it doesn't for everyone). Feel stupid for not trying it before when it was suggested to me, but I really didn't want to feel weird and spaced out. I try not to take meds unless I really need to. But Amantadine, just helps enough to give me oomf to survive the day. I feel much more myself.

And combined with a morning Berroca, Ginseng and Guarana supplement and I feel positively...

The third thing I have learnt is that yes. Moving house really is one of the most stressful things you can do. 

I didn't really anticipate how emotionally stressful it would be. We actually had the removal firm pack for us, and me and Lib disappeared for the actual moving day, so it could have been much worse, but my goodness. The whole process was just exhausting. It's only now, sitting on my comfy new bed with a snoozy girl and pooch lying next to me, listening to the sound of birds (in our old place, it usually the constant sound of traffic/building work) that I can take a step back and realise how tough it was. But it's done now. And we have a beautiful new home, and we're all very happy. There are a million and one posts I could write about moving/new house/etc so for now I'll leave it at that!

Number 4? I've learnt that I have been sleeping badly for possibly 4 years. The new house is in a conservation area, so it's dark at night. And quiet. And there isn't a flipping great lamp-post outside our bedroom window, or traffic tearing down the main road at all hours. Or drunk people shouting at 3am. It's amazing. Most mornings (nobody's perfect) I wake up and feel refreshed, instead of groggy. 

Hmmm....the fifth and final thing wot I have learnt? Following my last relapse, I've learnt that MS is an enigma and I need to be on my toes. I think I mentioned in my last post how strange it was having new symptoms crop up, and how I put them down to other causes, not my MS. Well, this relapse definitely taught me that if I experience anything 'odd' I shouldn't shrug it off. I fell into the 'well my walking's ok, so I must be alright' trap! The one thing that drives me mad (like so many other MS sufferers), is some people's assumption that you're fine because you're not using a stick/in a wheelchair/blah blah, and yet I was doing myself! Complete idiot! The cerebral symptoms, like losing memory, might not be as physically shocking but they're just as serious. There's only so much you can put down to 'baby brain' (yep, two and a half years in, and I'm still milking that one!). I was reminded when I had my steroids in Feb, that I can actually have them every 4 months, so I've definitely learnt to consider going to the neurologist earlier if there are worrying signs, instead of waiting for me to hit rock bottom. Try and be a bit pre-emptive, perhaps. 

Anyway, I think that's enough waffling for today. It's good to be writing again! :)

A New Year..and some big issues.

After nearly 13 years, I thought I'd finally gotten to grips with this whole MS lark, but no. It decides to throw sme a curve ball.

Bear with me...my mind is pretty frazzled. And the problem with not writing for a while is that I feel like there's loads I need to off-load...but I'm going to try to keep this to the point. I apologise if I start waffling though...and if my spelling or grammar is shocking!

I have suffered from 12 major relapses that required steroid treatment over the last 13 years. And the first 11 of those relapses followed the same 'pattern' in that it affected my legs and movement. However, this time...it's been different. I've been struggling so much over the last 4 - 6 weeks, having more bad days than good and I assumed it was all down to the house selling/buying and generally being run down or whatever. Which it could of been, sure. However, I think looking back I've actually been relapsing over that time and I haven't realised. Which sounds stupid, I mean, how can I not notice?! But normally when I relapse, it happens very quickly like someone has literally knocked the feet out from under me. This time, it definitely built up slowly. I found I was forgetting things..a lot. To the point where at one point I was holding my close friend's baby and panicking, thinking to myself  'oh my god...I don't know your name'. I was doing things, like taking my medication, and forgetting 5 minutes later that I had done it (thank goodness for my daily dose organiser). Having to take pauses when I was talking to someone to try and get back on track. Picking up the remote control and forgetting how to do something. Not being able to spell things properly. Driving and not being able to remember where I was heading. Bumping into things..a lot. It was snowballing. 

Then last Saturday, I noticed I had started talking with a lisp. And my teeth felt kind of numb, like I'd had an injection from the dentist. This got steadily worse, and before I knew it, I was finding swallowing difficult. 

Of course I went to the doctor, then my consultant, to be told it was a relapse. But it threw me. I was having a relapse but I could still walk. I felt...relieved. Even though I was still obviously very ill. Just not having that feeling of frustration because I couldn't get around, made things easier. I was due to be put on steroids without hitting absolute rock bottom..and it felt..kind of good. Like I was taking control of the situation. I have this fear when I go to the consultant or doctor, that they are going to say I'm exaggerating, or not believe me or something. I was trying to think of where this came from, and then I remembered one Registrar doctor who, when I walked in with my stick (because I was feeling a bit wobbly and it made me feel more secure) said 'why are you using your stick?'. Now, I'm sure he meant that in a purely 'tell me what's going on' thing, but the way it came out made me feel instantly on edge, and obviously feeling tired and over-emotional, made me feel like he was accusing me of something. Stupid I know...but understandable. 

So this time, despite not having my 'usual' symptoms, and me convincing myself that I wasn't having a relapse because I could walk, my consultant could tell something wasn't right. And that's the thing with MS. I knew it varied so much between sufferers, but I didn't think it would vary with me after all this time. It made me realise that I've lived with something for nearly 13 years, and I still don't know it, and probably never will. Do these new symptoms, mean there's new damage elsewhere in the brain? 

It has certainly made me reassess things again. I haven't been on any medication for 3 and a half years now, after my consultant admitted that the interferons didn't seem to be having any effect. Fine by me, because I hated HATED injecting. But now, there is a new oral medication http://www.mssociety.org.uk/ms-news/2013/12/nice-confirms-new-oral-treatment-ms-nhs that has just been approved. It is meant to reduce relapses by 31%, and if taking the higher dose of 14mg, helps reduce the number of brain lesions by 80%*. 

Now you can see by my latest episode, why this particularly appeals. Yeah, there are side effects, but nothing worse that what I went through with the interferons. Plus, I'll start trying Amantadine as well, to try and combat some of the extreme fatigue I've been getting. It doesn't work for everyone, but it's worth a try. 

I still believe in the Swank diet, and will definitely stick with it (whether it stops the progression of disability or not, I know for certain that it makes my day to day symptoms better), but a new oral drug popping up just at this time (it literally got released 2 weeks ago) has got to be good news. After all, a combination of that and the Swank diet is covering more bases. I've been put on the waiting list, so fingers crossed it should be available to me within the next few months. The bad side to it, is that it not safe to attempt to get pregnant on Teriflunomide (Aubagio), and it stays in the system for 2 years (though they can do something to flush it out quicker). So it sort of makes up my mind about having another baby any time soon. Never say never, but at the moment, it would just be too much pressure on myself. 

It's time for me to concentrate on what's best for my health, try and get back on track with things, and be as fit and healthy as I can be for Libby, Si and everyone that I have already.

Anything to avoid a repeat of this for a good long while. 

Grim.

"Oh, you've got fatigue? Yeah...I get tired too". *THUMP*

Ok, so this scenario hasn't happened to me for a long time (mainly because I have hugely supportive family and friends), and I didn't actually thump the person...but blimey I felt like it!

After an awful day of fatigue yesterday I blatantly had to discuss the 'F' word. The current issue of the MS Society magazine features a great article* on fatigue, and after reading other people's experiences, it got me a-thinking...how would I describe my fatigue?

I actually have more hair than this..and glasses.....and I'm a girl.

Now, for starters, there's a big difference between tiredness and fatigue. For me, tiredness is more of a mental thing. Where my brain is fuzzy and I'm not quite with it. Sore eyes, muscles a bit tired, zoning out and staring into the middle distance...you know what I'm talking about, right?

Fatigue, is one...two...ten notches up from this, depending on the day. The fuzziness is a dense fog. Where you literally can't think. Even if you're trying really hard to focus on one thing, it ain't gonna happen because your fog lights have gone kaput.

You feel like your whole body is slowly shutting down. For me, it's the legs that go first. The muscles burn and scream, as though I've just run a marathon. I feel like every step I take is through a thick swamp.

The aches and pains come on, as though I have just come down with an awful case of the flu. I go from feeling ice cold, to feeling like my skin is burning.

This isn't me..though it's closer than the cartoon at least.

It then creeps up my body, and all of a sudden I have a coat made up of weights engulfing me, and every movement takes a huge amount of effort. Then, if it's really bad, I feel like I have a motorcycle helmet on my head, weighing me down. I struggle to keep my head upright, and sounds just don't register in the same way. 

This certainly isn't me...but this girl looks like she's struggling with it as much as I would!

It could be all of these things put together, or even just one, but one thing's for sure...it sucks. 

All of these descriptions sound very melodramatic, but as other MS suffers will know, it really does feel like this. It varies in its degree of severity, sure, and I understand why it is hard for a non-sufferer to imagine. I mean it sounds nuts that you could get symptoms like this, randomly, without any real warning, and for any length of time...but it's true. 

The fact that MS suffers are being turned down Employment Support Allowance because on a day to day basis they 'only' have fatigue, is shocking. Until you've experienced chronic fatigue, you have no idea how painful, frustrating and utterly soul destroying it can be. 

So...no. It's not the same as being tired. 

* MS Matters Issue 108, pg 22. For more info, visit www.mssociety.org.uk

Oxygen Therapy - Day 2

After Monday's adventures into the world of oxygen therapy I felt pretty good. I found it surprisingly draining, considering you just have to sit down and breathe! I guess I was more nervous about it than I thought. 

The next morning, I woke up feeling good. I slept really well, which always helps! So I headed off for my second session, taking time before hand to get properly prepared. The pressure change did bother my ears the first time, so I bought some decongestant called Otrivine which clears congestion, and some Earplanes ear plugs that are designed to help pressure change on flights. They seemed to help because my ears were a lot better yesterday, which meant I relaxed a bit more! No blog posts this time though - I watched a film on Netflix! :)

This afternoon I have my third session, but I've woken up with a bit of a cold, so I need to check that I can actually take part. Even if I can't, at least I know what I'm letting myself in for when I start up again! 

  

16ft under the sea...

Ok, so I'm not actually under the sea. But I am in a pressurised container, which is the probably the closest I will be to being 16ft under the sea. I've bitten the bullet and I'm having oxygen therapy at the West of England MS Therapy Centre..which, fortuitously, is only 20 minutes down the road from me.

It's probably the strangest thing I've experienced. There's a group of 7 of us sat in a circle around the edge of the tank, all with oxygen masks on with the hissing of gas going off, but all doing mundane things like reading Kindles, flicking through magazines and surfing the net...or in the case of me, writing a blog and doing the food shopping! It's bizarre. :)

It's a big commitment (an hour or so every weekday for three weeks) but fingers crossed it'll be worth it. There's a chance I might feel worse in the next week or two, but according to a couple of people I've spoken to, it's worth the minor set-back. I just want to be as fit and healthy as I can be for our honeymoon at the end of February!

I'll keep you posted on developments....

It's all gone a bit ZEN.

Nearly a month into my latest relapse*, and though I'm greatly improved, I'm not as perky as I would have hoped.

It's the flipping hands! I just can't trust them. Every time I pick something up I have to really concentrate and almost watch them to avoid dropping whatever I'm holding. Weirdly though I didn't realise how little strength I had in my left hand until I tried to squeeze a spongy ball (random, I know...and please...no puns).

So I looked into using the local MS Therapy Centre. I did enquire about 4 years ago out of curiosity, but I was talked out of it by my consultant, who was concerned that it was a big step, (seen as I was relatively symptom free at the time), thought it might worry me to see others who have much more extreme symptoms. I have to say, I think he was right. I wasn't ready for it. I would have been using the service because I could, rather than really needing to. 

However, it's now time to make use of the things available to me that might help me and make things easier. My hands in particular have brought it home to me that I have a degenerative condition, and that there's a chance that they might not go back to normal, and like my legs, I'll probably have good days and bad days. I'm not being pessimistic about it (honest), it's just that recently, I think I've finally just accepted my MS. 

This is the way it is. Chances are I will get worse over time. but there's not a lot I can do about it....and there's no point in getting stressed about what could have been. Or about how I used to have less symptoms. That time has been and gone....unless by some miracle a cure heads my way some time soon. 

I have MS which sucks. But it's the only life I've got so best make the most of it, eh?

* So the long post I wrote about my first pre-pregnancy relapse has been inexplicably deleted! You could blame the hands/my fat fingers/loss of concentration/pixies, but whatever the reason, it's gone so I will briefly summarise now:
- Had a humdinger of a relapse nearly a year after Lib was born.
- Affected my legs as usual (ended up purchasing a wheelchair!)

On the Yellow Brick Road of Recovery..

..and I am really quite relieved.

Woke up this morning feeling...well..crap. But it was a normal 'I feel myself' crap, not a 'I can't take this any more!' crap.

I'm still quite stiff and tingly and a bit numb, especially in my hands, but there has been a vast improvement. In fact my feet feel pretty much back to normal, which is good, so I'm hoping any healing is working its way up! So yeah, good stuff. Also, feeling perky with non-tingly feet, I managed to walk to the shop earlier with my friend too, which is the first time I've really walked outside (aside from hobbling to and from a car) for nearly 3 weeks.

And here's a turn up for the books! As I am sitting and writing this, a girl called Maria is cleaning my house. It feels very strange, and I have this weird urge to keep talking to her. I feel a bit nervous! It's odd having someone in your house, doing something you could be doing yourself. Though I guess that's the whole point..I can't keep up with it myself, and though it may be strange it's rather nice knowing I'll not need to worry about doing it. Plus it'll be lovely not sitting here when I'm ill and thinking 'blimey, things are in a state'. You never know, it might turn me into a brand new tidy person! One that doesn't annoy her husband by leaving bits of paper and cups and bits of wool and thread everywhere!!

Today's Achievement: Curried Pumpkin and Vegetable Soup

Made with two numb hands and only three sliced fingernail mishaps (not in the soup, I hasten to add). Perfect for Halloween!


INGREDIENTS

The scooped out inside of your Halloween pumpkin (or just any old pumpkin!)
2 onions
2 large potatoes
One small swede
2 carrots
1 tsp ground ginger
2 heaped tsp mild curry powder
1 pint vegetable stock
2 tbsp flour

- Dice the vegetables into small chunks and remove any seeds from the leftover pumpkin.
- Fry the onions in oil until soft.
- Add the vegetables and fry for approx 5 minutes.
- Add the spices and flour, and fry for another minute, allowing them to coat the vegetables.
- Pour over the stock, bring to the boil then turn down the heat and simmer for half an hour or until the veggies are really soft.
- Season to taste and blend if you prefer a smooth soup.

The TinglyMum Guide to Surviving a Relapse

Nearly a week after finishing the steroids and things have definitely improved but most of the symptoms still remain. However it's still early days. That's why I thought it was important to write a little list to myself to consider next time I have a relapse. Hopefully it'll get me through those rocky periods.

-------

So, Chloe. I know you're panicking but read this and try to be PATIENT.

1. Drink plenty of water. I know it's a faff getting to the loo, but it's going to make you feel more fatigued and down in the dumps if you don't drink enough.
2. Don't be tempted to drink alcohol...even if your daughter has done something momentous! The steroids make it taste horrible and it makes you feel queasy and it doesn't help your symptoms at all. 
3. The symptoms you are feeling ARE normal, you just don't have relapses that often so you've forgotten.
4. Don't panic if something new crops up, like the left hand 'claw'. Just because it's new, doesn't mean it's going to stick around for ever.
5. You NEVER feel better while you're taking your steroids. You should have remembered that one at least! You'll feel utterly crap and helpless for the 5 days, then it's normally at least a couple of days after finishing before you start to feel a little better....so HANG IN THERE.
6. Staying in bed and feeling sorry for yourself isn't a bad thing. You're completely entitled to. However, you always feel a bit brighter if you get out of bed and have a change of scene..even if it's just sitting on the sofa.
7. Don't freak out about having to use the wheelchair. It's only temporary and you will get stronger. Even when you do feel better, use the chair as an option so you can take part in things and go places. Just because you can walk and often don't look disabled, doesn't mean you don't qualify to use the wheelchair. You know your symptoms and you need to stop worrying about what people think of you. 
8. Try and get some fresh air every day.
9. Have a cry. It makes you feel better. 
10. BE PATIENT! Recovery takes time, so don't get down in the dumps if you're not back to normal after a couple of weeks. Think about what your body has gone through and how important it is to give yourself time to recover. Even if you feel better, you don't REALLY feel better. Not 100%. So don't try and get back to 'normal' life straight away. You'll just prolong the inflammation and the time it takes to go down, which is dumb. Your body needs to REST and MEND.

-----

'Tired and Mopey' seeks.....

......anything to distract her and make her feel more normal.

Feeling rather sorry for myself today!
I confess the weather isn't really helping. It's cold, foggy, grey and oppressive, and I'm still stuck in the house apart from my evening 'constitutional' in the wheely thing.

Here's where I'm at the moment:

- A bit stronger in my legs
- Right hand working up to a point,  though still fuzzy and not very strong
- Left hand still determined to stiffen up and cause a nuisance, meaning picking Lib up is still difficult
- Still have numbness in my muscles so I can shuffle around and do simple things but not really feel it
- Pain has started in my back, neck and shoulders and every muscle just feels tense and sore
- Agitated, sad, stir crazy and generally feeling like a big pile of poo!

I have this over-whelming urge to get out and do something away from the house, but that requires energy and purpose....both of which I am lacking at the moment. It sounds ridiculous, but just sitting in the chair and being pushed around seems to exhaust me at the minute. I feel completely stuck in limbo. But things could be worse. After 11 years you'd think I'd have learnt to be a bit more patient!

Am seriously tempted to spend the day in bed and feel completely, and utterly, sorry for myself.

The Calves of Wonder Woman.....

Sadly I don't actually look like Wonder Woman. My muscles in my legs just feel utterly rock solid after the steroids. I swear I'd be able to do some damage if I could actually wield them! Hiiii-YAAAA!!

I finished the steroids yesterday and had a restful day in bed, after accepting that I probably wasn't taking it easy enough this time around. It sounds ridiculous, because I'm sort of incapable to doing anything BUT rest and sit, but as I discussed it with my Hubbie in the far away lands of the US (after having a mini midnight breakdown), I realised I can't really switch off if I hear Lib up and about. With past relapses I would have slept a LOT, but if I hear the little one downstairs it's just *ZAP* and I'm awake, unable to get back to sleep, so I end up hobbling downstairs to sit with her. I intend to write a post soon about fatigue, but just briefly, it has seemed easier this time around without having the fog of fatigue engulfing me. Despite the physical disability, I've remained somewhat myself, but I'm definitely conscious that I need to do what I can to prevent my fatigue getting worse because it makes things a million times harder.

So I've made an effort to properly switch off in the hope it speeds up recovery, and I have to say, I did feel like it had worked yesterday evening. I felt positively chipper (though got ahead of myself and had a glass or two of wine...and with the metallic taste in my mouth it did not sit pretty!). Sadly though it seems the highs were short lived as today I feel pretty rotten. My right hand has improved, which is great. Left hand, not so much. I still have the numbness pretty much every where, though I can shuffle quicker, so my stiffness has obviously improved. I think I have a bit of a coughy cold thing brewing as well, which won't help, but it's kind of expected when you consider how much the steroids suppress your immune system. 

Anyway..to cut a long story short, I'm certainly not out of the deep dark woods yet, and I'm going to sign off for now before my hands seize up completely!

In more positive news, Si is back this evening and therefore happiness will be restored. Oh..and my daughter took her first steps on her own yesterday evening! It made me well up! :)  

The Niggling Needle-Pricks - One Week In

Well. Well, well, well.
One week into MEGA RELAPSE (big booming voices, please) and there's a slight (I'm going to whisper it in case I jinx it..) improvement.

Woke up and hands felt a lot less stiff (sadly my left hand has stiffened up again over the morning..but PAH! Who needs a left hand anyway? ;)
I can feel light sensations on my skin now, so the fuzziness/pins and needles must have subsided a bit which is good. It seems that it's more my muscles that are numb, so if I grab something I can't tell how strongly I'm gripping...meaning I can't really hold Lib. Likewise, if something, possibly dog-shaped, has decided to sleep on my legs I can kind of feel him but not the full weight.

One draw-back is that I can now feel pain. I've been prodding myself with a toothpick throughout the week (the fun never stops!) to test my reaction, and finally today I can feel it for what it is...stabby stabby pain. I've now concluded that enough research has now been conducted via the needle-prick test. Oof.

In other news, my daughter is still taking the fact that her Mummy isn't really getting out of bed, on the chin. A few wobblers yesterday when I couldn't pick her up off the ground, but what can you do? It felt horrible to do it, but I found that just turning around, shuffling away, but calling her after me was the best thing to do. It kind of distracted her. Certainly better than me just standing over her looking sad and helpless!

Apparently there's talk of an outing later in my chair. Possibly to somewhere with people! God forbid. At least I'm too weak to propel the chair myself now, so there's no risk of me bashing into anyone and getting sued. Seriously considering getting some 'L' plates....and a sign that says "Don't pity me. I was just like you a week ago"....that'll confuse 'em! Ha!

The Scoopy Clamp Hands are Back..

Amusingly suggested by my husband, but yes I have to agree, this chap bears quite a resemblance to me at the moment.

Definitely 'Chloe Clamp Hands'. 

If anything I've deteriorated again today. My legs and hands are nearly completely numb..yet I can still stand and shuffle and clamp and pretty much function. It's the weirdest feeling though. My legs feel like I have a pygmy hippo sat on them weighing them down! The test will be if I get any weaker as I doubt I'll be able to even use my honed clamping skills then.

Anyway, tomorrow's another day. Had the usual "What if I don't get any better?" panic earlier, but it's passed. Fingers crossed for some improvement tomorrow.....

First Wheelspin of the Metsons

First trip out and feeling a bit brighter. Lib was very chilled out!
Managed to go solo down our road, which was hard work, but kind of amusing. Knackered now!!