Summer!

I'm a big fan of the summer, and love the heat, but this summer is different. Irish summers are never really any different to any other season. It's usually rainy, breezy and dull with the occasional "warm" day. I'm warm ALL the time! Even when it's raining I don't bring a jacket out. I'm sticky and grumpy and sweaty!
It's mad how Vitamin D is supposed to be great for you, but the only way of doing that is to get out into the sunshine. It affects my eyes too! I feel like a wannabe celeb going around in my sunglasses all the time but if I don't, I can barely see.

Anyone any tips on how they cope in the Summer months?



The cats, Bear and Squid, enjoying the sun :)

I'm a normal MSer!

I had an appointment with my neuro last week, and after a go- over, he said he reckoned I'd live (okay, I'm paraphrasing!) and that I wouldn't have to have another check up for a year!!

I could've kissed his lovely little Chinese face. That's all I have wanted in the last few months, as I feel I'm either at the hospital or docs once a month! Now I'm like a normal MSer who just has to go for yearly check- ups.

He even gave me a little mustard coloured card with "twelve months" written in the Appointmemt Date section. I felt like it was my very own Golden Ticket!!!

Sicky Sickness :(

Oh I'm a moaning Michael again! I have tonsillitus but have also picked up some virus as well. I feel very "bunged up" in my head so am less than constructive right now. I've gotten better at taking my vitamins too though, so maybe this is illness will get me into a better habit. I take Naudicelle Plus, which is a mixture of Vitamin D and Evening Primrose Oil. I started taking these tablets just after my diagnosis so I can't say whether they work or not, but it can't hurt to take them... even if they are the size of my thumb and I have to take six a day!!!!!

I've had a bit of a tough couple of weeks emotionally too. Just as I feel an improvement in my mood, I hit a brick wall again. It got me thinking about Elisabeth Kubler- Ross' Five Stages of Grief. I remember studying this in college in the actual context of grief during a terminal illness or after a bereavement, but it can absolutely translate to grief after being diagnosed with an illness like Multiple Sclerosis, as you are grieving for the life you had before diagnosis.

As you can see from the illustration, the stages are denial, anger, depression, bargaining and acceptance.
They are not the exact emotions that everyone will feel, but more of a framework to help us understand what we may be feeling at any given time in our grief.
These stages are said to be experienced at different times by people experiencing grief, and are not reached in any specific order.

I can definitly see where I've experienced specific emotions from the Five Stages, and I can also see which ones I struggle with and keep coming back to. I don't know if the "Acceptance" stage is easily reached, but I'm going to allow myself to reach them it my own pace and not feel that I need to be okay with this diagnosis now. After all, I am still a newborn in this MS journey.

New Symptom- Bruxism

I thought I was done with new symptoms- apparently not!

About a month ago, I noticed that I would wake up during the night with my jaw aching a bit. I then realised that I would grind my teeth during the day too. This is something I have never done before, so thought it was a bi- product of a new medication I started (unrelated to MS). I stuck it to the back of my mind and decided I would discuss it with my GP on my next visit.

I was browsing an MS website the other day and noticed other MSers were discussing grinding their teeth as a part of their symptoms... So now I know this is just something I will have to live with! I will discuss it with my doctor, and see if he feels the need to refer me to a dentist but I'm hoping this will just fade away, like the L' Hermittes Sign.

I tell you, every day is a school day- I don't think I'll ever learn enough about this disease!!!

Other than that, I'm doing well. I'm still trying to take every day as it comes, and it seems to be helping me manage my life.

Happy happy happy!!!

Oral Treatment, Gilenya

I tend not to focus too much on the medical part of MS on my blog, but the release of Gilenya http://www.ms-society.ie/news/show/fda-approves-oral-therapy in the UK last week made me hopeful so I thought I should write about it.

When I was diagnosed with MS, loads of the professionals I had dealt with had spoke about an oral treatment that may be released this year. I was really excited when it became available in the UK as it should be available in Ireland soon (allegedly September 2011). Then I noticed on an online forum that someone had listed  A LOT of side effects from it (slowed heart rate, distorted vision, elevated blood pressure, increase risk of serious infection, liver damage etc.). This freaked me out and now I think that I should stay on Copaxone. I don't even know if I'm eligible for Gilenya yet, but the reactions I have been having from the Copaxone have been getting me down. I would have been interested in starting Gileyna, but now I'm not sure. I have been lucky with Copaxone as the only side effects I have had are ones from the injection sites. I don't think I'm strong enough right now to tempt fate and start taking an oral medication that may not work, or may cause serious side effects.

I am SO appreciative of all the recent research into MS disease modifying treatments, but I just feel so confused about the whole thing. I just wish it was easier to know what was best for you!

Moaning Michael

For all the positivity I preach, this week I have been such a moaning Michael.

I am SO tired all the time, which is completely ruining the chance of anything productive coming from me.
My mood and motivation are so low, and I just can't get my shit together. My pjs have become my favourite "outfit" and the couch is my safe place. I have tried to increase my motivation through setting little tasks and goals throughout the day, but it's not working :(

I do feel like I am suffering with what a lot of MSers call "Brain Fog". I'm struggling with remembering things, and sometimes during sentences, words just "fall" out of my head. It can be quite frustrating, and scary too, if I am truly honest.

This is the first time in a while I've felt like this, emotionally, but I'm allowing it to happen. I'm the only person who puts me under any pressure to do things; clean the house, cook dinner, run errands, etc. I've finally allowed myself to take time out when my body or brain tells me to. A few months ago, my body had symptoms which forced me to rest, now it's my brain. So I'm going with the flow.... but no doubt I'll be back to my shiny, happy self in no time!

Stress Free Me!

One of the things that I was told shortly after I got diagnosed was that "stress and MS aren't friends". Like many of the women I know, I'm mad for a bit of stress, and have a skill of finding it in the smallest of situations!! I have spent the last few months experimenting with different stress- relieving tactics. I am still finding what works for me, but would appreciate any hints or tips my fellow MSers have. These are things I have been using to manage my stress:

Yoga

I started yoga with the MS Society a few weeks ago and attend a weekly class. I also spend a few minutes every day doing a variety of stretches and moves that I have learnt from the class. I'll do a bit of stretching while the kettle is boiling/ watching the telly etc. This really works for me as it is a gradual thing I do throughout the day, as opposed to having to set aside a full hour to devote to it. Yoga is something that can be adapted easily, depending on your physical abilities at the time. There are specific stretches that can be done from a chair, which really helped me when my legs were weak. One thing I really enjoy about yoga is that it is strongly linked with mindfulness; being in the here and now. This works well to encourage a quiet mind.

Meditation
I am an avid user of meditation. I read a few books on meditation techniques and found Moon Over Water, by Jessica Macbeth to be extremely helpful. It gives steps to help silence those thoughts running through your mind, to allow you to achieve a state of calm. I also bought a relaxation CD that I will listen to sometimes to help me "get in the zone".

Aromatherapy
I have always been a fan of aromatherapy. I find the smell of lavender really soothing, so frequently use it in oil burners. I have lavender shower gel, bath salts and body moisturisers, which all contribute to my feelings of well being.
Peppermint is very cleansing, so I sometimes burn this when I need to feel refreshed. It has also been linked to stimulating the mind, so it is good to use when your brain is having a bit of an "off" day, which for me, is more frequent of late ;)
It's always good to check with your doctor before using essential oils because they're not suitable for everyone. Peppermint and lavender are not suitable for pregnant ladies.


So I would be interested in hearing what you all use to calm your minds and de- stress?