The "Three Minute Pee"!

So I am sitting here, curled up on the sofa with yet another UTI. I'm so sore and feeling utterly sorry for myself! About two weeks before I was diagnosed with MS, I had my first ever UTI that wouldn't shift with anti- biotics. I have had many since! MS can encourage UTIs (Urinary Tract Infections), due to the positioning of certain lesions on the brain. I think that the culprit lesions are around the spinal cord area. My Copaxone nurse told me the reason- the lesion is preventing my brain from telling my bladder (correctly) that it is empty. When you go to the loo, and fail to get rid of all the urine, it starts to breed bacteria and can result in an infection.

I think most of us drinkers are familiar with "breaking the seal" on a night out. You can go to the pub, and spend two hours happily drinking... then you go to the toilet (and break the seal), and then every 10- 15 minutes, you need to go to the toilet for the rest of the night. A very good friend of mine called Joy, (a perfect name for her, as she is truly joyous) told me about the concept of the "three minute pee", where when you go to the loo on a night out, you need to stay on the loo for three whole minutes. You will pass urine when you first go to the loo, but your bladder will nearly always expel more urine the longer you sit there, therefore allowing you a longer break before you need the loo again. This leads to more drinking and dancing time!!!

I found this concept to be truly revolutionary! I would always do it on a night out, but never realised how useful it may be to my MS. So from now on, I shall be occupying the bathroom for three minutes at a time... I'm sure the time spent on the loo will prevent time being spent in the doctor's surgery!

Cog Fog at it's best!!!

Yesterday, this was less than hilarious, but I can now look back and see how ridiculous the whole thing was!

The past few days, I have been very "foggy", essentially, my brain is not functioning at normal speed. It is a terrible symptom of MS, and it seemed to appear as the weakness in my arm and leg flared up too.

I was so sleepy all day yesterday, I got out of bed at 11am and napped twice before 5pm, but I had agreed to spend the weekend minding an 11 year old. When I arrived at the kid's house, I didn't take my bags from the car as my foot- drop was in full swing. The eleven year old decided he wanted chips for dinner, so I drove to the local chipper, five mins down the road. I used to work in the chipper, so spent the few minutes waiting for my order chatting away to old colleagues, not a care in the world!

When I got out of the chip shop, I noticed my car's passenger window was fully open. I had never even noticed that it was open. I thought nothing of it, as I was gone less than ten mins, and could see my car from the window of the chipper. Then it hit me.... my handbag was missing from the passenger seat. Panic struck, and I thought of all the bits in my handbag; my new purse, keys, money, bank cards, etc. Luckily my phone was in my pocket! I thought, "I'll get back to the house and phone the Gardai". So I was pissed off at myself, driving up the road, and glanced to the back seat of the car. MY LAPTOP WAS GONE!!!!  It is a brand new laptop, and was a gift from my brother. I immediately pulled over, and was shaking as I phoned the Gardai from the roadside. I didn't know whether to cry or vomit, I was so shaken. The Garda was so nice, and was trying his best to calm me down. I explained to him that I forgot to close my window but was gone a matter of minutes. As I was telling him the story, I put my hand to the back of the driver's seat, and felt my bloody laptop bag- it had fallen under my seat! I immediately told the Garda, and told him that I would get back to the house and phone him regarding my stolen handbag. He agreed I should do this, along with reminding me to calm down. Walked into the house, so shocked and filled with adreneline, and there it was... my lovely bright orange handbag, sitting on the kitchen table!!!

I never felt so silly. My emotions were all over the place, I was chuffed that I hadn't lost my bag and laptop, but felt so stupid that I had left my window open. I also felt so embarrassed that I had phoned the Gardai in such a state. Of course, I phoned back to say all was well, and apologised for bothering him. He was so lovely... It probably gave him and his mates a laugh!!

I'm back!

Hi friends! I have been a bad blogger, but I'm back!!

I had no internet which made blogging impossible, but a Fairy Godbrother set me up with wi-fi so I intend on updating more regularly.

Lots has changed in the last year and a half. Although I have had no "relapse", per se, I have gotten a few more symptoms. The main one being foot drop in my right foot. I am intending a physiotherapist, who has said that my foot is fatigued! It is strange, as it works perfectly fine until I walk or drive for extended periods of time; pottering around my home is no problem but overuse of my foot makes it lazy. It's like my toes prefer being on the ground, no matter how hard I try to lift it! I have a dictus splint, which hooks onto laced up shoes to hold my foot in place. It helps, but it pinches quite a bit when I walk. I have started wearing it upside down, which helps a bit, but it still rubs against my skin a bit. I'm still experimenting with what works for me, but that seems to be the name of this MS game!

Anyway, I'm glad to be back, and I hope to chat with you all more regularly now :)

Donating my bits for MS research

I recently read about a woman who planned to donate her brain and spine when she died for the purpose of MS research and it got me thinking about doing the same.

I'd always planned on donating some of my organs after my death anyway. For some reason, the idea of donating my skin or my eyes always freaked me out! Logically, it shouldn't be any more different than donating my heart or my kidneys but it just makes me feel icky! The idea of my brain sitting in a jar somewhere also does not appeal to me but I would love to be a part of MS research.

Allowing for my scarry brain and spine to be used to find a cure for this disease makes me feel good, so I'm gonna get in contact with the Irish MS Society and enquire further about it!

Although I'm not planning on dying for quite some time.............

One Year On....

This day last year, I was admitted to the Neurology ward of Beaumont Hospital, Dublin, as they tried to determine the reason for my weak hand. I never in a million years  thought that I would be diagnosed with Multiple Sclerosis.

The diagnosis was a big shock, but due to my ignorance, I wasn't THAT worried, and felt I could cope with anything.

The months following my diagnosis were very difficult, both physically and emotionally. I had to make a lot of changes in my life, regarding work and how I managed stress. I left my job, and began using new techniques to manage my stress. Then gradually, the physical symptoms eased off. The emotionally difficulties will always remain, but I think I have just become more equipped to deal with them. The spontaneity of the disease will always be difficult to deal with, as I like to be in charge of my life... but lets face it, who doesn't?! 

At this moment in time, I am healthy and free of relapse. I am constantly scared that I may wake up with another symptom, but that is just how life will be from now on. I don't let the fear run my life or prevent me from doing things- I think that's the only way to manage it. 

It's definitely been a tough year, but I have amazing family and friends and THEY are the reason I have survived it x 

My first relapse?

Argh! The MS seemed to be hiding for the last few months and I've been getting myself back to the person I used to be... but I think it's coming back :(

A couple of weeks ago, I noticed a burning sensation on my upper thigh. It would last for a few minutes, and come on a few times every day. I went to the doctor last week and he gave me Capsaicin cream to alleviate the burning. Now the burning goes down from my thigh to my toes on my right leg. Don't get me wrong, it's not the worst experience ever but it's still a reminder of this disease.

A few days ago, I had a weird feeling in my right arm and hand (where it all began!). I have practiced the tests that the Neuro docs do (straightening my arms out and trying to hold them there). In the past, when my arm was weak, it would drop down out of my control. This time, my arms are staying up. So this seems to  be  a feeling as opposed to a physical symptom. I'm hoping it stays like that, but I have a horrible feeling in my stomach that this is gonna be my first relapse.

It's strange, as I felt, for the past while, that I was coping well with the idea of my life with MS. Now, I'm not so sure. I'm trying to prepare myself for this possible relapse, but is there really a way you can do that? Is there really a way to allow this disease to borrow the use of your limbs for a while? To make you feel so tired that you're actually too tired to sleep? To cause you discomfort through pins and needles and burning in your body? And the worst bit is not knowing when your body will be returned to you from the grips of the disease.  I'll just have to wait and see......

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?


I couldn't resist posting these photos up of our cats sunning themselves in the garden :)

Squid

Bear

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?

Finding my new "normal"

The last three weeks have been the happiest I have had in the past four months. When I wrote the post "I'm sick, no really", I was suffering with a really bad cold. It turned into a chest infection. Within three days of finishing my anti- biotics, I got a viral infection which resulted in a bad cough and groggy head :( So four days ago, that cleared up, and two days ago I managed to pull a muscle in my lower back. I feel so unlucky! Despite all of these things attacking my body, the MS has been barely present. My L' Hermittes signs  have quadrupled since hurting my back but it's one of the symptoms I don't mind (for more info on L' Hermittes, click here http://www.mult-sclerosis.org/LHermittessign.html).

In between all the mini- sicknesses I've had over the past month, I cannot help but be excited that the MS seems to be regulating itself in my body. I feel almost myself again. I am really looking forward to being an active participant in my life again. I can't wait to get dressed up and go on a girl's night out that consists of dancing and too much vodka and I am really excited about going back to work and becoming a contributing member of society again.

Although the idea of returning to how my life was before is so exciting to me, I am also really nervous. Prior to October 2010, my life was a certain way. I worked long hours and nightshifts, had a really bad sleep pattern, stressed out a lot, exercised very little and spent so much time wanting to be everything to everyone, without "minding myself". Since my diagnosis in October, all my life has been about is MS. I think about it hundreds of times a day. I am aware of my limitations at this current time, and I am learning about what my future limitations may be. The new challenge I am/ will encounter in the next while is how I can marry my "old" life to my "new" one. I have been made very aware by all the MS support workers I have spoken to that my life will no longer be like what it was before. I definitly have to change certain aspects of it, and have been incorporating these changes gradually, (yoga, meditation, relaxation, asking for help/ support, etc.).

MS is now a part of my life, as opposed to being my life, which, through no fault of my own, has been the case since my diagnosis. I have been consumed by the MS now for four months... This is the exciting/ nerve wracking time where I have to incorporate the two.

Wish me luck!!!

Oh, the stress of it all!!!

I have grey hairs. I have at least 25 grey hairs. AND I'M ONLY 28!!!
My mother thinks this is perfectly acceptable, but to be honest, I think she is looking for a grey haired companion in me. She was in her early 50's when she got her first grey hairs, and even now, in her mid 50's, just has a slight "salt and pepper" look.

Although I had some grey hairs before my diagnosis in October, I'm blaming MS on the increase of them. During my lumbar puncture in hospital, my boyfriend held me tight to comfort me. Later that night on the phone, he told me that he spent the whole time looking at my grey hairs! The cheek of him!!!
I used to blame my stressful job on the 3 or 4 grey hairs I had, but since my diagnosis, they have multiplied. Granted, I am getting older, but to gain 20+ grey hairs in four months is unacceptable! I blame the stress that Multiple Sclerosis brought to my life.

I have always wanted the stone white hair that my grandmother had. I really loved Tyne Daly's hair when she kept it in a long plait as her character, Maxine in Judging Amy (I loved that show!).  I would have preferred to wait a while though. At this rate, I'll be totally grey by the time I hit 50!

I have dreadlocks now, and would love (in time) to have hair like this lady.
Someday....

Cooking and Baking

It's Pancake Day!! I'm a lemon and sugar sort of girl, but I might branch out today and have something different on mine :)

Cooking and baking has been the only outlet for my creativity over the last few months, due to my limited mobility and energy levels. It started at Christmas when I realised I would have no presents to give my (almost!) in- laws. I couldn't go shopping for gifts, so I ordered my groceries online and searched for recipes that would make nice gifts. I made chocolate fudge, paté, mince pies, chilli jam and lemon curd. The chilli jam seems to be the favourite. I have since been commissioned to make it on a very regular basis, and have made (and given away) over twenty jars at this stage. The chilli jam is VERY tasty, and very addictive. It goes with most meals, and is now a permenant fixture in the fridges of my family and friends. My boyfriend worries that he may have to send me to rehab... some days I have it with lunch AND dinner :)

The thing about cooking is that it relaxes me. I can take breaks and don't have to work to anyone else's deadline. I also really love creating something from nothing. It pleases me to make people happy through feeding them nice things, a quality that I learned from my gorgeous mother.

I have been off work since my MS burst on the scene in October, and really missed the sense of purpose my job gave me. Cooking for people gave me my sense of purpose and achievement back. Cooking allows me to multi- task, use my organisational skills, manage my time effectively, be creative and use my own initiative in amending recipes to individual tastes.

Suffering with the symptoms that MS brought has definitly given me the time to explore other hobbies that I can take part in, despite mobility/ dexterity issues.
Cooking is my new favourite!

I'm sick. No, really!!!

For the first time since my diagnosis, I feel normal! I'm saying this after spending the last few days in my jammies, struggling to shower and walk around. It started as a cold but has turned into a chest infection that is threatening to burst my tonsils open! I can't stop coughing, and it hurts SO much!
But this is great. Why? Because I'm so caught up in being miserable with my infection that MS is barely getting a second thought.

I am SUCH a baby when I'm sick. All of my family or friends could back me up, citing the many phone calls they get from me sniffling down the phone, encouraging them to say "poor Lydia", in a way that would make you think I was a four year old!

I can't say that I "feel" the MS in my system on a general day, but I've always felt different to how I was before my diagnosis. The past four days have been a welcomed respite from that "different" feeling. I'm sniffly, have a temperature and can't cough without wincing, but you know what? It's a brilliant feeling :)

Affirm and Visualise

When I first learnt that I would have to inject myself every day, I was panicked, and wondered how I would ever get used to the idea. I spent the days prior to my first injection worrying sick about the prospects of having to pierce my own skin. I then remembered an inspirational story from a facilitator of a course I attended. He was a needle- phobe, and developed diabetes so was required to inject himself on a daily basis. He used affirmations and visualisations to prepare himself for the prospect of injecting.

I used this idea, and spent the three days before my first injection repeating my affirmation "I am calmly and safely injecting myself with my MS medicine". I would do this hundreds of times a day. I would wake up saying it, and go to sleep saying it. I also put a lot of energy into visualising myself injecting. I worked really hard on this, and when the time came to use Copaxone for the first time, I managed to calmly and safely inject myself with it. I have never felt anxious or nervous about injecting and I firmly believe that this was due to my preparation in using affirmations and visualisations. I often use them in my day- to- day life now.

Injecting fun!!

I have been injecting myself with Copaxone every day now since November 11th, 2010. Now, it is a part of my daily routine, and causes no distress at all, but it hasn't always been easy. When I first learnt that I would have to inject myself, I was panicked. I had no idea how I would manage it. I then remembered a training course that I had done where the facilitator had taught us about how he used affirmations to prepare himself when he discovered he had diabetes and would need to self- inject.

I spent days repeating