Sometimes I look back on at a week and wonder what did I do and where did that time go? Or its when you get the question when you're back in hospital for the next Tysabri boost "have you been up to anything since your last infusion?"
Its times like these that leave me feeling like life is passing me by - I've nothing 'major' to report - and gives me a hate of the MS and what it stops me from doing whether that is due to fatigue or the fact that I wouldn't be able to get on a skateboard and go down the ramps showing my son a trick or two. Ok so that last part would not happen even if I had full balance and coordination as I'm pretty sure I'd end up sprawled on the floor needing a trip to A&E.
Instead having nothing major to report can be a good thing - I've not broke my leg or burnt the house down (touching wood that I'm not tempting fate writing this).
So whilst there may be no 'big' event to detail in the time given or to write a blog post about there are plenty of smaller things that have made up the passage of time.
In keeping with this here's some of my small things this week:-
* going to a quiz with friends and making an individual contribution on the grand total of 2 questions out of 8 rounds (we had a couple of brainiac quizzers on the team)
* finding a cache with my son; navigating an alternative route, playing in some small but deep snowy areas from storm Emma, realising we'd walked into a field with an electric fence a second after my son had walked into the fence (he doesn't do anything slow - there were no signs on it or nearby but he's absolutely fine and laughs about it)
* creating static shocks and getting them to jump between our fingertips the day after the electric fence incident
* being told the latest jokes from the recent 'poo' edition of science magazine Whizz, Pop, Bang! - like ugh... seriously yuck... perfect toilet humour for my son and science experiments surrounding poo (no need for actual poo!)
* spending time with friends even the 10 minutes when dropping off a birthday card knowing there's friendships that doesn't matter if you don't see each other as much as you'd like they're still amazing friends and you can catch up where you left off.
Life is made up of the smaller things - enjoy them - there's more of them than the bigger things but that doesn't mean they're any less enjoyable.
Wednesday, 14 March 2018
Tuesday, 6 March 2018
From MonSter to Mummy and Back Again at A Fatigue Pace
The MonSter in me rears it head and I can feel my tolerance diminishing. Add to the mixture a child who has a thirst for knowledge with incessant questioning about anything, everything and nothing and the tolerance there minutes earlier has evaporated leaving a ratty mummy (I grow a rat tail and ears instead of a devil's tail and horns). My poor son ends up with a mummy who can take no more questions long before I've answered the first one.
OK, so this may be quite familiar to most parents but imagine the ability to answer the questions being put on fast forward 10x with that final part of "Please NO more questions - let mummy think" being too soon for an inquisitive mind that wants to learn and you want to encourage. You're wishing you could manage for longer sharing your knowledge and the feeling of guilt returns as you send your child off to entertain themselves - still dangerous but the potential fallout/need is further away after a possible nap or quick meditation.
I have learnt to give myself the space I need, knowing this is a way to return back to Mummy instead of the MonSter Mummy. For me a brief meditation to recoup and gather myself then gives me enough to return to family life - for a short while at least.
I get up to my feet, brace myself for what I'm about to walk into and step through the door to the room my son is silently in - this cannot be a good thing... silence - to find him reading - and the Mummy returns - hugs all round!
OK, so this may be quite familiar to most parents but imagine the ability to answer the questions being put on fast forward 10x with that final part of "Please NO more questions - let mummy think" being too soon for an inquisitive mind that wants to learn and you want to encourage. You're wishing you could manage for longer sharing your knowledge and the feeling of guilt returns as you send your child off to entertain themselves - still dangerous but the potential fallout/need is further away after a possible nap or quick meditation.
I have learnt to give myself the space I need, knowing this is a way to return back to Mummy instead of the MonSter Mummy. For me a brief meditation to recoup and gather myself then gives me enough to return to family life - for a short while at least.
I get up to my feet, brace myself for what I'm about to walk into and step through the door to the room my son is silently in - this cannot be a good thing... silence - to find him reading - and the Mummy returns - hugs all round!
Thursday, 1 February 2018
#TimeToTalk
This week has been difficult - particularly in deciding what to blog this week.
The fatigue due to the MS is affecting what I can manage and it is making me feel fed up and down as it's not the person that I am.
When I heard today is Time to Talk and with my mood being low I knew just what to talk about.
I wouldn't say I'm depressed but a low mood can easily slip further towards depression.
Depression in the population of people living with MS is higher than the general population (MS Society; MS Trust) and its hardly surprising - not only does MS bring about adjustments to life, there can be changes within the brain from lesions that could increase depression. Additionally a side effect of some of the medications -given for symptoms of MS and the disease modifying therapies - is depression.
Add into this the stresses and strains of life; family, employment (redundancies), life stresses there will be times that are naturally harder than others to remain upbeat.
There are times I cry, become frustrated and find it tougher to leave the house depending how the symptoms of MS are at that time.
It has taken time but being kind to myself is important in not becoming swamped by those negative feelings.
One thing I describe as being my therapy is crafting - in particular, crochet. It gives me time out; I can think about things, come up with ideas, feel productive, give my body time to rest and the repetition of stitches and counting can have a calming effect.
There are friends I will seek out even if to spend time with them and not discussing emotions specifically - laughter has an amazing lift and boost.
Likewise music can have a positive influence provided I'm listening to something that makes me grin from memories the music provokes or from my attempts to sing (poorly) - belting out a song like nobody can hear - much to my son's embarrassment.
I love the outdoors and meditation both of which help me when I have a low mood, again they're both ways for me to have time out.
Depression happens, anxiety happens, low moods happen. You're not alone, there are people who will listen whether a friend or a stranger on a helpline. They want to listen and it may give you that opportunity to frame things in your mind another way.
It's #TimeToTalk whether that is today or a day when you're ready to talk.
The fatigue due to the MS is affecting what I can manage and it is making me feel fed up and down as it's not the person that I am.
When I heard today is Time to Talk and with my mood being low I knew just what to talk about.
I wouldn't say I'm depressed but a low mood can easily slip further towards depression.
Depression in the population of people living with MS is higher than the general population (MS Society; MS Trust) and its hardly surprising - not only does MS bring about adjustments to life, there can be changes within the brain from lesions that could increase depression. Additionally a side effect of some of the medications -given for symptoms of MS and the disease modifying therapies - is depression.
Add into this the stresses and strains of life; family, employment (redundancies), life stresses there will be times that are naturally harder than others to remain upbeat.
There are times I cry, become frustrated and find it tougher to leave the house depending how the symptoms of MS are at that time.
It has taken time but being kind to myself is important in not becoming swamped by those negative feelings.
One thing I describe as being my therapy is crafting - in particular, crochet. It gives me time out; I can think about things, come up with ideas, feel productive, give my body time to rest and the repetition of stitches and counting can have a calming effect.
There are friends I will seek out even if to spend time with them and not discussing emotions specifically - laughter has an amazing lift and boost.
Likewise music can have a positive influence provided I'm listening to something that makes me grin from memories the music provokes or from my attempts to sing (poorly) - belting out a song like nobody can hear - much to my son's embarrassment.
I love the outdoors and meditation both of which help me when I have a low mood, again they're both ways for me to have time out.
Depression happens, anxiety happens, low moods happen. You're not alone, there are people who will listen whether a friend or a stranger on a helpline. They want to listen and it may give you that opportunity to frame things in your mind another way.
It's #TimeToTalk whether that is today or a day when you're ready to talk.
Friday, 26 January 2018
When a Dog Becomes a Rabbit
A friend I've lost touch with over the recent years has recently had a baby so I thought it would be a good excuse to make a gift to welcome the baby to the world along with letting my friend know that I've not forgotten her.
I thought a crochet baby blankie/sleepie/comforter would be ideal so I looked at patterns I had; found one and started, then I re-evaluated it. Nope...the pig character was not going to work on this gift (despite having made this for others in my extended family). When we think of certain friends there's just certain animals which would be a no no and others that would be a winner... a pig... nope... now a dog... yep... especially a pink and purple dog... just like the ones that are seen being walked everyday... or is that just me??!
I love my crochet and have created a couple of patterns for characters for children in the family so I was up for the challenge. Normally I have a few pictures to look at to help work out the shape. All I had this time was a sketch of some degree from an image in my head.
So, off I went creating - head shape - check; safety eyes attached - check; ears added - check. Then I look at it... hhhmmmm...ok... the ears are floppy but pointed... the head shape isn't as angular as a dog... it still had no nose... what shape to do for the nose... hhhmmmm... ok, it's a rabbit! I swear it was always meant to be a rabbit! Hon-est!
The love of creating - making mistakes, taking roads that you didn't know were there from when you set off on the initial challenge.
Just like the love of parenting - less mistakes (maybe), but there's all the side roads - those at a tangent; those running alongside but one street away from where you thought you were going.
Just like the love of life - plenty of mistakes but lots of learning and the side roads you never knew existed particularly life with MS.
For me in all walks it's embracing and accepting those other roads - they don't need to all be bad - you may come across a street party.
I thought a crochet baby blankie/sleepie/comforter would be ideal so I looked at patterns I had; found one and started, then I re-evaluated it. Nope...the pig character was not going to work on this gift (despite having made this for others in my extended family). When we think of certain friends there's just certain animals which would be a no no and others that would be a winner... a pig... nope... now a dog... yep... especially a pink and purple dog... just like the ones that are seen being walked everyday... or is that just me??!
I love my crochet and have created a couple of patterns for characters for children in the family so I was up for the challenge. Normally I have a few pictures to look at to help work out the shape. All I had this time was a sketch of some degree from an image in my head.
So, off I went creating - head shape - check; safety eyes attached - check; ears added - check. Then I look at it... hhhmmmm...ok... the ears are floppy but pointed... the head shape isn't as angular as a dog... it still had no nose... what shape to do for the nose... hhhmmmm... ok, it's a rabbit! I swear it was always meant to be a rabbit! Hon-est!
The love of creating - making mistakes, taking roads that you didn't know were there from when you set off on the initial challenge.
Just like the love of parenting - less mistakes (maybe), but there's all the side roads - those at a tangent; those running alongside but one street away from where you thought you were going.
Just like the love of life - plenty of mistakes but lots of learning and the side roads you never knew existed particularly life with MS.
For me in all walks it's embracing and accepting those other roads - they don't need to all be bad - you may come across a street party.
Wednesday, 17 January 2018
We're a Motley Bunch
This week was my first Tysabri infusion since before Christmas - I wouldn't say I look forward to it as such, as I never feel a great difference between the run up to the infusion and once having received it (although I believe it is keeping things in check and wouldn't go without it at the moment), but what I do look forward to is the time there and the people.
It's a friendly group with great nurses and after having been there once every four weeks for the past year and a half plus the IV steroids with the same nurses before that, there's great rapport and we have a laugh despite it all.
When the nurses have trouble canulating me (nothing new there - sometimes it's easy, other times it's not with no rhyme or reason) and ask if I've drank plenty I can reply tongue in cheek that I've not made sure I've been drinking, eating or keeping myself warm. With another of the motley bunch turning round with 'apart from that you're a model patient'. When you can have a laugh and not take things so seriously it's welcome and we do have a laugh. Many of these people I would never have encountered in my general life yet we meet up like a regular coffee catch up - sat down having a laugh and a break from our standard lives. And for the times we are quieter the infusion means some quiet reading time or listening to music without the thought that x, y, z needs doing and the feeling of guilt.
Then the next morning following the infusion I was back to the meditation centre after a Christmas break and catching up with another motley bunch. Even though we spend most of our time together not talking there is a camaraderie. Although the group is not a MS group I probably wouldn't be doing meditation if it wasn't for looking for a holistic approach to managing my MS.
I genuinely am appreciative for the motley bunches I feel part of and whilst things may change or the groups disband and we can't meet up like we currently do I'm thankful they are currently in my life.
It's a friendly group with great nurses and after having been there once every four weeks for the past year and a half plus the IV steroids with the same nurses before that, there's great rapport and we have a laugh despite it all.
When the nurses have trouble canulating me (nothing new there - sometimes it's easy, other times it's not with no rhyme or reason) and ask if I've drank plenty I can reply tongue in cheek that I've not made sure I've been drinking, eating or keeping myself warm. With another of the motley bunch turning round with 'apart from that you're a model patient'. When you can have a laugh and not take things so seriously it's welcome and we do have a laugh. Many of these people I would never have encountered in my general life yet we meet up like a regular coffee catch up - sat down having a laugh and a break from our standard lives. And for the times we are quieter the infusion means some quiet reading time or listening to music without the thought that x, y, z needs doing and the feeling of guilt.
Then the next morning following the infusion I was back to the meditation centre after a Christmas break and catching up with another motley bunch. Even though we spend most of our time together not talking there is a camaraderie. Although the group is not a MS group I probably wouldn't be doing meditation if it wasn't for looking for a holistic approach to managing my MS.
I genuinely am appreciative for the motley bunches I feel part of and whilst things may change or the groups disband and we can't meet up like we currently do I'm thankful they are currently in my life.
Wednesday, 10 January 2018
When Fatigue Changes My Taxi to a Pumpkin
So how are the New Year resolutions going? I'm joking! I hope the start off the New Year is going well in whatever way you wish.
It certainly doesn't feel like we're already 10 days into 2018!
I managed a night out on Saturday for a meal and some drinks. The night had been planned since November to try and get a date we could all make - even that didn't work but most of us made it!
The friend of MS - fatigue - had been showing its head for a couple of weeks but I was determined to get out as I hadn't managed an excuse to get dressed up over December and had a babysitter all sorted for my son. Plus I knew they do good cocktails where we were going!
Lots of rest before needing to head out and some meditation gave me the start I needed. I even made it there slightly early which is quite unheard of for me.... I'm normally the one running late or getting there by the skin of my teeth - although that is with a child in tow.
Being there that little bit early have me time to sit and enjoy the taste of the mojito, it also gave me time to be me without a label being applied - Mummy, MS, lady with a walking stick looking fraught - I was the woman I forgot I could be; helping out other ladies with the zips on their dress, having a giggle that even with a boyfriend there's some things you need a woman for.
It made me think of the times I've been stopped for directions and thought that I obviously look like someone unthreatening with a walking stick and child - placing labels on myself - the truth being I always used to be approached for information/directions and wasn't it because I smiled at them as they were looking around. Yes I was probably easier to stop on those recent occasions when I'm walking with my stick (predictive text keeps coming up with waddling - think I prefer that word!) but there's more than that one label they're applying to me. And that is what I need to do! I'm Cheryl, lover of crafts, music, reading and meditating... oh, I'm also a mother to one boy and live with MS.
And when fatigue hits on a night out, as it did this time, I'm heading for the taxi by midnight (which is late for me) before it turns into a pumpkin!
It certainly doesn't feel like we're already 10 days into 2018!
I managed a night out on Saturday for a meal and some drinks. The night had been planned since November to try and get a date we could all make - even that didn't work but most of us made it!
The friend of MS - fatigue - had been showing its head for a couple of weeks but I was determined to get out as I hadn't managed an excuse to get dressed up over December and had a babysitter all sorted for my son. Plus I knew they do good cocktails where we were going!
Lots of rest before needing to head out and some meditation gave me the start I needed. I even made it there slightly early which is quite unheard of for me.... I'm normally the one running late or getting there by the skin of my teeth - although that is with a child in tow.
Being there that little bit early have me time to sit and enjoy the taste of the mojito, it also gave me time to be me without a label being applied - Mummy, MS, lady with a walking stick looking fraught - I was the woman I forgot I could be; helping out other ladies with the zips on their dress, having a giggle that even with a boyfriend there's some things you need a woman for.
It made me think of the times I've been stopped for directions and thought that I obviously look like someone unthreatening with a walking stick and child - placing labels on myself - the truth being I always used to be approached for information/directions and wasn't it because I smiled at them as they were looking around. Yes I was probably easier to stop on those recent occasions when I'm walking with my stick (predictive text keeps coming up with waddling - think I prefer that word!) but there's more than that one label they're applying to me. And that is what I need to do! I'm Cheryl, lover of crafts, music, reading and meditating... oh, I'm also a mother to one boy and live with MS.
And when fatigue hits on a night out, as it did this time, I'm heading for the taxi by midnight (which is late for me) before it turns into a pumpkin!
Monday, 1 January 2018
New Year Resolutions!
Happy New Year and wishing everyone the best that 2018 can bring.
Now the nitty gritty that everyone talks about... resolutions.
Arghhh - we hear each year about resolutions and those who don't make resolutions appear to not be 'getting in the spirit'.
Previously I've never thought much to resolutions and had the opinion if there's something I want to do or change then I can do it from any point in the year.
This changed last year when I gave it some thought and decided I was going to give it a go but didn't want people asking me how it's going and berating me when I don't manage it or the ' well you may as well give up on it' attitude.
What I decided to do was write down my resolutions and wishes, keeping it safe so I could find it and read it in a year's time - which if you've memory difficulties like me could be a resolution in itself!
So, what were my resolutions for 2017... to mediate at least 3 times a week for 15 minutes each time; eat less chocolate; read 2/3rds of the fiction books on my bookcase along with the wish to remain relapse free and progression free.
It's been a productive year in terms of my resolutions and wishes. The meditation took some work and is still being worked at but I discovered the local Buddhist Meditation centre and use the Insight Timer app which since May I've managed just over 90% of days meditating at least once and whilst it may not always be 15 minutes, I have felt the positive benefits of what I have managed!
Eat less chocolate - yep, certainly eating less chocolate now compared to a year ago. I could always eat less but hey I enjoy it and a little of what you fancy....
My bookcase has continued to grow over 2017 but reading 39 books over the course of a year has been a major achievement for me and a thoroughly enjoyable one!
My wishes are less clear cut - there's been a couple of periods where I've been close to a relapse (agreed by the MS nurse) but being more aware of my body and kind to myself has kept them at bay without the need for steroids. This links with progression - I have had new symptoms in 2017 that are long lasting but not to the extent of a change from RRMS to SPMS so my wishes have kind of been fulfilled whilst not being clear cut.
My 2017 resolutions have brought me happiness and positive changes that I'm enjoying - if you are making resolutions this year I hope they bring you happiness (even if hard work initially) and if you're not making resolutions I hope you have happiness too in 2018.
So what are my resolutions and wishes for 2018?.. I'm not telling you - they're written down and I'll tell you this time next year!
Now the nitty gritty that everyone talks about... resolutions.
Arghhh - we hear each year about resolutions and those who don't make resolutions appear to not be 'getting in the spirit'.
Previously I've never thought much to resolutions and had the opinion if there's something I want to do or change then I can do it from any point in the year.
This changed last year when I gave it some thought and decided I was going to give it a go but didn't want people asking me how it's going and berating me when I don't manage it or the ' well you may as well give up on it' attitude.
What I decided to do was write down my resolutions and wishes, keeping it safe so I could find it and read it in a year's time - which if you've memory difficulties like me could be a resolution in itself!
So, what were my resolutions for 2017... to mediate at least 3 times a week for 15 minutes each time; eat less chocolate; read 2/3rds of the fiction books on my bookcase along with the wish to remain relapse free and progression free.
It's been a productive year in terms of my resolutions and wishes. The meditation took some work and is still being worked at but I discovered the local Buddhist Meditation centre and use the Insight Timer app which since May I've managed just over 90% of days meditating at least once and whilst it may not always be 15 minutes, I have felt the positive benefits of what I have managed!
Eat less chocolate - yep, certainly eating less chocolate now compared to a year ago. I could always eat less but hey I enjoy it and a little of what you fancy....
My bookcase has continued to grow over 2017 but reading 39 books over the course of a year has been a major achievement for me and a thoroughly enjoyable one!
My wishes are less clear cut - there's been a couple of periods where I've been close to a relapse (agreed by the MS nurse) but being more aware of my body and kind to myself has kept them at bay without the need for steroids. This links with progression - I have had new symptoms in 2017 that are long lasting but not to the extent of a change from RRMS to SPMS so my wishes have kind of been fulfilled whilst not being clear cut.
My 2017 resolutions have brought me happiness and positive changes that I'm enjoying - if you are making resolutions this year I hope they bring you happiness (even if hard work initially) and if you're not making resolutions I hope you have happiness too in 2018.
So what are my resolutions and wishes for 2018?.. I'm not telling you - they're written down and I'll tell you this time next year!
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