How we all doing?…

How we all doing? My last post was on the 28th December 2017 – it’s been a while!.

A few of my fellow MS’ers are struggling at the moment, so I just wanted to check in to see if fatigue has lifted, energy has improved, and we are starting to feel a little more, well, normal!.

I’ve been doing OK. Fatigue has been a bit up and down, been feeling run down, and my skin has reacted, so that’s a sign my body is telling me to try not to over think things, and be a bit more easier on myself. I’m listening…

Apart from an ongoing personal situation, there has been some positive news. I went for an MRI on the 5th January, the easiest and quickest MRI I have encountered over the last 7 and a half years! In and out in 20 mins, no contrast dye, and scan of the brain only. The results arrived about two weeks ago. I stared at the envelope for 5 mins, and like I said, going through a bit of a rough time at the moment, so I just thought sod it, what’s the worse that can happen! Ripped the envelope open, read the same line about five times, swore, a lot, cried, a lot, then shouted YES at the top of my voice! First I read “the scan reveals features consistent with the established diagnosis of MS”, yeah, yeah, tell me something I don’t know 😉 – “however, there appears to be stability with no new lesions identified over the intervening 2 years”.

NO NEW LESIONS! Get in there! I really, really can’t believe it! I honestly thought after the worse relapse I have ever had back in November, there was bound to be some new activity! As you can imagine, I am over the moon! And I never thought I would say this, but thank you Plegridy – you are not my enemy, even though my language towards you every two weeks before you hurt my body isn’t very lady like, you are my friend, and I thank you.

So, two years previous. I had new lesions, and one lesion had increased which freaked me out. Two years this April since I started using Plegridy, and although it doesn’t stop all relapses, it is definitely helping with the lesions. I have just had another blood test, results for which I will find out next week, as I still need to decide whether to stick (haha, no pun intended) with Plegridy, or switch to another drug…decisions, decisions.

Until next time, I sincerely hope we are all feeling a little brighter – keep smiling, and keep stopping to have a smell of those roses.

Namaste. x

 

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And another year almost over…

How are we all doing? Christmas is over, and now we are all in that in between bit before New Year – I’m a bit restless, but that’s a story for another time. 🙂

I would just like to say, my second year of blogging has been truly amazing. When I started in April 2016, I wasn’t sure how it was going to pan out – and I really wasn’t bothered if no one read my posts. My blogging is my way to express myself whilst battling MS on a daily basis. I have however, made some amazing new online friends, new followers, and for myself, following some inspiring individuals all over the world, who are also sharing their story and their battle – we all help each other in our own way, from vitamin tips, to fatigue tips – it all helps and we are always so grateful.

So, a big shout out to all my followers, my online family, my family, my friends, and a massive thank you to Mark. Thank you for all your love and support. I never, for one day, forget that my loved ones are also battling MS with me, taking care of me and supporting me.

I’m going to have a bit of a blogging break until the New Year. I have a lot going on, and just need some time to sort some things out, but please enjoy the remainder of 2017, and may 2018 bring us all the love, happiness and good health we all deserve.

Remember to stop and have a smell of those roses before the year ends though…you don’t want it to go too fast.

Until 2018….

Namaste. x

Merry “belated” Christmas…

Merry belated Christmas! I hope we all had a great Christmas with loved ones, and have managed to relax and not over do things!

Myself and the hero had our usual quiet Christmas, just the two of us. We like it, but we do miss everyone at this time of year. Christmas Eve Skype (Christmas morning in Australia), filled my heart. Watching our 17 month old niece playing on her keyboard, and doing a great Stevie Wonder impersonation melted our hearts – she has such a great personality coming through, and to watch her grow makes life just a little more precious.

It is now Boxing Day. I’ve done a bit of tidying up, usual chores of washing etc, but this Christmas has been so relaxing, my body is thanking me. I’ve been going through a bit of a rough time lately, and the relapse in November was a wake up call – but today, my spirits have been lifted, and I am excited for the new year ahead!

I therefore wish you all a very happy new year! Lets keep doing what we’ve been doing, look after each other, and more importantly, look after yourself.

I’ve stopped today to smell the roses –  life is beautiful. 🙂

Namaste. x

Liebster Award Nomination

Wow! What can I say, except, thank you Jen from Trippingthroughtreacle  for nominating me for the Liebster Award. I am a little overwhelmed, as I love reading Jen’s posts, and it feels nice that she has us, her “MS family” to help with any advice, and just our general “yup, we get it” comments!.

So, what is the Liebster Award Nomination I hear you ask…

“Originating in Germany in 2011, the Liebster Award 2017 is an online award that is given to bloggers by other bloggers. Liebster translates to sweetest, kindest, nicest, dearest, beloved, lovely, kind, pleasant, valued, cute, endearing, and welcome. The Liebster Award recognizes new and upcoming bloggers that have the potential to grow and become successful influencers within the blogosphere.”

My nominees:-

Alyssa fight ms daily

Sarah Myjourneyafter50

Shannon MSnubutterflies

Jen Tripping through treacle

Cooking-without-limits

Nominees – feel free to answer the questions below or to reveal 10 facts about yourself as I have chosen. There is absolutely no pressure to take part though! I just wanted to let you know how much I enjoy reading your blog.  The instructions are at the end. 🙂

Questions:

Does blogging replace or enhance keeping a journal?

Do you think education, as it is today, does justice to life and learning?

When do you find time to blog?

What is the one post made by you that you like the most and why?

What is your favourite book or series?

Would you rather explore the deep ocean or outer space?

How long would you survive a zombie apocalypse?

T-Rex or dragon?

If you would be a character in someone’s book, who would you get to write it?

Have you ever visited a place just because you saw it in a book/series/animation/movie? What was that place?

How has writing/blogging affected your life?

Ten facts about myself:-

My first waitressing job, I placed the small “floating tea light candle” in a customers glass of white wine instead of the glass of water which was on the table…it was valentines day also, and I was wishing the couple a lovely evening as I was lighting the candle. He laughed, she not so much. 🙂

I have in my possession, a scarf which once belonged to the bass player of a famous Australian rock band.

I love all music –  funk, soul, blues, but my all time favourites are, Johnny Cash, Janis Joplin, Nina Simone, Billie Holiday,  Creedence Clearwater and Neil Diamond.

In my head, I am a brilliant harmonica player. In reality however, some people may beg to differ.

I once dressed as a Zulu, and danced on a carnival float for my local pub, whilst singing along to the backing song of “The lion sleeps tonight”. We came second. And yes, there were more than two floats!

I cry. At everything.  My brother has nick named me “Tiny Tears Toni” as all I seem to do is cry.

I never forget a birthday.

I’m a little bit quirky, kooky – which isn’t a bad thing in my eyes. 🙂

About 20 years ago, I played tambourine on stage with the Super Furry Animals. It only lasted 5 minutes, and dare I say, at the time, I didn’t have a clue who the band were! Fun times though.

Rules for nominees:

– Thank the blogger who nominated you and link back to their blog in your post.
– Upload the award to your blog. It can be done as a blog or on the sidebar.
– Answer the same questions I have above or share 10 facts about yourself.
– Nominate 5 blogs who you believe deserve to receive the award.
– Notify the nominated bloggers so that they can accept the award.

Thank you again Jen for the nomination!.x

Namaste. x

And another relapse…

I’ve been on a relapse for seven days now and I only freaked out, and burst into tears once! I’m getting better!. Remember the heavy left leg, which I have put up with on and off for over a year? Well, it decided to become even more heavier, and difficult to walk – my poor body telling me to stop and take some time out. We’ve been understaffed a little at work, so I was doing way too much, and going up and down the stairs at work too many times than I should have been – it’s just the timing isn’t great, but I guess I can’t help it.

So, I have been resting. And resting. And my goodness isn’t it boring. I watch Ellen every day as I need to laugh, be happy and not stress out with what’s going on with my leg, lesions etc, so she has helped, big time!.

I have spoken with my MS Nurse this morning, and she doesn’t want me to rush back to work if I feel “a little better”, only when I feel “a lot better”. My GP has just said the same and has signed me off for another week. I have also just spoken with my boss to tell him, and he doesn’t want me back until Monday week, so I guess I can rest some more, and not to worry about rushing back with a day in mind.

That’s the thing with MS, and the difficulty in trying to explain your symptoms and what a relapse means, especially to your boss. I can’t say, “oh, I’ve been resting, so I reckon I’ll be back to work next Wednesday, as I can’t be certain.  MS is such an unpredictable disease. And the situation at work next week wouldn’t have changed.

So, Monday. The leg was feeling better, but not the best. It’s not numb. I can still walk. I’m trying not think about the “what if’s”. I guess it is what it is. First relapse in about a year, so not bad going I guess. And a year ago?. Well, I was in tears almost every day, probably making everything worse, and thinking “this is it”. Then come the New Year, back to work, and back to the norm. Gotta laugh I guess – better than crying!.

So, I know I will get there. Support all around which helps, and makes life a little bit less stressy. Especially when you know in the back of your mind, your lesions are probably having a party in your brain, but you just ignore them in the hope they wont party for too long. :).

Bit blustery out here today, but I stopped earlier, opened the back door, and breathed in the fresh air – life is pretty good, considering.

Namaste. x

 

 

 

Around, and around I go…

My poor brain – haha, not literally, but pretty ironic. Since my last blog post, I have been going around in circles regarding Copaxone.

I’ve been reading more reviews, as you do, and I’m not liking some of the side effects. I was aware of the heart palpitations, tightness in the chest, the aches etc which should only last ten minutes after each injection, but I am not enjoying reading about a few more side effects which include, possible closing of the throat, and the kicker for me, permanent skin indentations of the skin in injection site due to loss of muscle.

I also have asthma, so I am really struggling as to what to do.  Do I give it a go and hope for the best and try to stop the nagging voice in my head telling me ‘knowing your luck, you’ll probably get hit with all of the above’!.

If I decide to give Copaxone a try, it has to be for at least six months. It doesn’t seem a long time, but for an individual who has to self inject three times a week and try to deal with side effects, it feels like a lifetime – every two weeks is enough for me at the moment!.

My dad asked me yesterday over Skype, “what if you stop treatment all together”?. Yes, great minds think alike!. I would most definitely suffer a bad relapse, which can result in an increase in lesions, symptoms etc. Not always the case, but a risk.

I had my blood test on Thursday, and will speak with my MS Nurse next week regarding the results and all of the above. The decision however, will still be up to me. I will get there. I need to. I had last Thursday and Friday off work as holiday, and depression, fatigue and sleep, filled my two days off work.

On a lighter note, we will win the lottery – I will give up work, stop all treatment as I won’t be working so may feel better, and happy days – nothing like ambition hey!. :).

Take care wherever you are in the world, and I guess I will definitely stop this weekend and have a smell of  those roses…

Namaste. x

 

 

I really want to get off this ride now…

It’s no lie when you hear the words “it’s a rollercoaster ride”. I’ve been on this ride for 7 years now, and I knew it would be bumpy, very bumpy some days, but I really have had enough now. I just want to get off the ride for a day or two, and do some normal every day things without feeling utterly exhausted after an hour or so…ahh, the dreams us MS’ers have!.

Anyway, feeling sorry for myself doesn’t get me anywhere, but the past 18 months is slowly taking its toll on me. 18 months since I started self-injecting with Plegridy, and I have been feeling pretty rubbish. A  few mild relapses lasting two-three days, and I’ve been plodding along, because that’s what I have to do. As you know from previous posts my white blood count has been low, very low, but nothing to be concerned about.

I received a letter from my MS Nurse last week asking me to book myself in for another blood test in October. I booked it, and gave her a quick call. My last blood test in June shows my white bloods to be low, not surprised, but now my platelets are low, very low! Then we discuss how I’ve been feeling since June. Nothing has changed and I’m honest with her, brutally honest with her. I hate this disease. I work Monday to Friday, and some weekends I don’t even leave the house because I am exhausted. When its injection weekend, well, that’s always a write-off because of the flu-like symptoms. Then Monday comes and I have to get myself together to face another working week. I’ve just had enough. She said it’s no wonder I’ve been feeling so low, fatigued, no energy etc, because of my bloods and the side effects of injecting. We then discussed changing my treatment as Plegridy obviously isn’t working for me. When I said to her, “I thought this was it – I thought this is my life now”, she said no. Just because you have MS, this is no life for you. Then the tears of frustration, anger maybe, came. I needed to let all this out. The great thing about crying on the phone to your MS Nurse, is that they just get it. They know we don’t want sympathy. She quietly talked over my crying and snotty rant, and calmed me down.

So, I was asked to think about changing my treatment to Copaxone, and I’ve decided I will. From injecting once every two weeks, it will now be three times a week. I was freaking out about site reaction marks as mine seem to fade after four weeks, but its all to do with my bloods. Come off Plegridy, fingers crossed my bloods increase, and Copaxone is the treatment for me – hopefully!.

I’m dreaming of duvet free weekends, and enjoying my life even more…

Don’t forget to stop a while for a smell of those roses…they will pass you by.

Namaste. x