Guilty Pleasures!

Ok, so I put the radio on for my son. His request Fun Kids on DAB, of course I put it on totally against my will... or maybe not! I have to say the Disney tunes and kids humour is quite addictive! 

Could I get away with listening to it and blaming it on not having made it over to the system to change the station should any adults appear?! 

This is definitely a reason to have a kid! The childhood humour before the twisted adult humour takes over! 

We're already at half term holidays - I'm sure that time is speeding up the older I get! - I've decided this holidays to take it a lot easier. The fatigue has been taking a hold much more - we've more rest time and home activities planned for this week. Although somehow for one of the activities I managed to mix up the plaster for the car figures wrong! Don't ask how, but balls of slightly wet plaster don't break down well to make a smooth paste! 

I'm now at one of those MS stages of willing to try alternatives, nothing too desperate but if it isn't going to hurt or do any harm then it's worth a try - acupuncture, mindfulness, laughter yoga, T'ai Chi - so when you see a lady balancing with hands moving slowly, needles pointing out of the body, chuckling away to herself whilst focusing on her breath you know it's me! 

One thing I have come across is Forest Bathing which is apparently something that is part of Japanese culture. The aspect that resonated with me is my realisation of the withdrawal I experience when I haven't had a good long time in a forest and how I crave it - there may actually be more to it than just the freshness of the air and escaping from Wi-Fi and phone signal! 

So if that said lady above is also in a random forest somewhere don't be afraid! 

Pumpkins Are Not Just For Halloween!

I'm going to put it out there... I bought a pumpkin to eat!! 
The bloke on the till seemed horrified when I put this suggestion to him rather than spending my evening carving a picture into the pumpkin (which I am no dab hand at!). "Ohh...Pumpkin Pie?" No, no, no! The only pumpkin pies I've known have been made with tinned pumpkin.  I can't be the only person to enjoy a bowl of pumpkin soup! And its great in cakes, or even roasted and whacked in with some pasta.
Now all I can think about is a bowlful of creamy pumpkin soup for this evening! 

This weekend gone, marked the first night away for my son to somewhere that was none family without me! I dropped him off at the sleepover - aware of his age and thinking I'm sure I didn't do anything like that when I was his age - got into the car and fretted. It took me a good few minutes before driving out of the carpark, unbeknownst to me, he was having a cry at me leaving, at that point in time.  He never cries at me leaving him, not even starting preschool, but he stopped crying and had a fantastic time. 
Me on the other hand, didn't leave my phone anywhere just in case they called with an issue, and didn't want to make use of the super early night I could have had with my friend fatigue, for being afraid that nighttime could be a time that he gets upset and wants his Mummy! (Which he didn't!)
The next morning I had a very rare morning without my boy in the house, so what did I do... I put his clothes in the wash, stacked up and put the dishwasher on (as we know we shouldn't be leaving them on overnight) - which included his items from the evening previous to him leaving for the sleepover - all by 8:15am and didn't even make myself a brew until after this! 

Last week I had a lovely opportunity to meet a virtual person I speak to on social media.  Its one of those where because of the profile picture I didn't actually know the person I was meeting.  This is making it sound seedier than it was! 
When I end up with scrap yarn (and those knitters/crocheters/crafters out there appreciate this) I never knew what to do with it until I came across a local charity who asks for Plushi's to be made for children going through cancer treatment and the charity then distributes them (www.the100project.net/plushi).  Now I turn the random scrap yarn that is too small for anything else into colourful little plushi's that can be held in a child's hand, with a funny face stitched on them.  I've previously made them and dropped them through the letterbox but they've moved location and this time I rang the bell and met the lovely gentleman (my friend came with me as I dragged her along), although we did have to shoot to go and pick up our sprogs from where we had left them.  

When the Weather Does Funny Things

Again, this is much later than I had hoped for to be writing my next post, but I'm going with the old cliche of better late than never! Seriously how do these cliches end up in our language and how long do they have to be around before we start thinking of them as old?!? The tunes I used to listen to as a teenager are now considered retro according to some music labels! Anyway I digress again....

The positive look is that time is moving quickly, but then this could be a bad thing as I've a few Christmas crafts I'd like to do before then and as its been over social media and on the TV there's not even 100 days before Christmas now and those of us who are crafters know how long even the smallest simplest things can take!
In line with that I've already started making Christmas stocking tree decorations! Now I've the debate of which charity I am going to donate to this year instead of sending Christmas cards out, plus anything that comes from the Christmas tree decorations.  I try to think of a charity with which I have previously supported through voluntary work over the years or one which is close to my heart, whilst not repeating them in consecutive years.

Now it is (slightly) cooler and the hotter days are behind us (or so we thought but apparently - if you believe the weather reports - there's a mini heatwave due to hit next week!), hopefully the Uhthoff's syndrome can behave itself for a few months, and give us a rest from the influences the weather has on the MS.  
Instead the mist/fog that surrounded us a few days ago decided it would be funny to behave like optic neuritis, when I get an eye (or both) that give the appearance of misting up and within a split second, clears, except it wasn't clearing up quickly.  My brain was baffled! It truly felt like I was having to work harder! 
Seriously if it isn't one season, its the other! But I did see (pun intended) the funny side to it, even if laughing to myself on the school run may not be socially appropriate, and could get the men in white coats involved!

This academic year has already led to so much more being available to my son after school with various clubs and groups - plus he's not as extremely tired as he was last year after school so can manage the extra activities without a major breakdown.  
What no one told me though, was this can hit you harder than them starting school! I was one of those Mum's who didn't cry when my child started school, and I reckon I took it in my stride without feeling too lost.
Starting the after school activities however, I suddenly feel lost!  All this extra time to do my crafts! Well maybe I should put a bit more time into my writing! 
There is also the role that has taken on more importance - the taxi driver - taking my son to all the different events and clubs and picking him up.  As long as the back seat driving isn't every single journey I will cope! Although he did tell Grandad the other day that he was driving too fast! 

How Did That Happen?

I would say the last couple of weeks of the holiday flew by and to some extent they did, but oh how the fatigue hit! 

Its that dreaded unknown again; is this my new level of fatigue; is this fatigue from the Tysabri; or is it just that its the end of the summer holidays and my levels in reserve are running very low?
Whilst time will tell and will I ever truly know, its been time to implement back up plans! 

During the last couple of weeks of the summer holidays I have managed to call on friends to help out, they've driven us to places for trips out (more like the children can play and we can sit and have a brew from the cafe and maybe, just maybe a piece of cake), they've kindly taken my son for me for the day and I can rest, and when I've not managed the housework to a standard (or at all) where you could welcome guests they've invited us around to their house instead for a play date! 
Seriously where would I be without these people! 

Now I love cooking, putting ingredients together to create a fantastic, flavoursome meal.
By the end of the school holidays I was putting together a meal from the freezer with the microwave! In my defence the meals are previously homecooked fantastic, flavoursome meals that I have frozen.  
Relating back to the fatigue this worked well for us, there was a good selection of meals in the freezer from previous weeks and it got us through the final week generally healthily... the chippy visit may not have been so healthy!
I have carried on this type of cooking this week (minus the chippy - so far!) in the hope I can build up my reserves of energy.  I'm sure by the end of the week I will be able to manage to rustle together a tuna pasta bake!

As for labeling school uniform... why did I leave it all to the last minute??! I went to label his school trousers, only to find I hadn't even washed them! Quick message to other school Mum's and to my relief others were sending their boys in shorts this week *pulling out his school shorts from last term*.  
I sorted out enough school uniform for Monday and Tuesday telling myself I would do the uniform for the rest of the week AND all the extras of uniform whilst he was at school... I've done the uniform for the rest of the week.  The rest has been labeled but is still in a heap un-ironed on the ironing board.

Now my little one is back at school, he is happy going in and his teacher is a character. He always welcomes them all into the classroom and acknowledges the parents/family/carers around which can't help but bring a smile to start the day! 
Of course I'm going to miss my son being around quite so much, but I am going to be happy about a bit more rest; and maybe about being able to drive without a backseat driver for the whole week (only over another ten years of him being a backseat driver, then I can get him back!). 

We got through the six weeks, we're both in one piece - that is each - although my son coming off the ramp on his bike and ending up with his bike on top of him and bruises and cuts everywhere was a close call.  We've had fun, started new hobbies, and made memories of places we visited, and activities we did.
Now he's back at school and I need to make time for me to do the housework; clean; cook; iron school uniform; mindfulness; rest; hairdressers; and writing my blog on a more consistent basis!

Calming Tea

That's it!

I've been reduced to the 'calming' tea, because drinking mojitos/Pimm's/wine/Baileys would be socially inappropriate at 10 am every morning on my own!  Plus there is always the fact that I'm one of the unlucky one's for who Gabapentin reacts with alcohol so I simply cannot manage the amount it sometimes feel would be necessary!

Its not been all that bad to be honest.  I have not appreciated the fact my son is used to having time away from me and we both need the time without one another.  He's just too young to be off on his own so its finding a compromise... holiday club!

I can go and drop him off and we get some time apart whilst he's being safely looked after and having fun with other children.

And whoever thought a guinea pig would be an undemanding pet (me) has never met Rocket.  So far this week its been 2-0 to her.  If she does not want to come in from the run, she runs around and refuses to be picked up - this is the guinea pig who is no hassle to be picked up - when she wants!

The second time, I found myself standing in front of the fridge not remembering why I was there (nothing new there with memory issues I have due to the good ol' MS, but usually there is something in it for me, or the boy).... Then I remembered, I was there for even more fresh food for her as she had been hassling me from her cage and looking up at me with those eyes of 'and where's mine?'!

I hate to say it but I have had to mention the C-word already... Christmas....  As I'm a crafter I have to start planning early.  Plus I cannot guarantee a relapse free time between now and then but I can guarantee the C-word will be happening in December! 

Added to this I offered to do a Hungry Caterpillar theme crochet gift (partly as a challenge for myself and because I love to crochet) forgetting just what it was that, that hungry caterpillar ate on the Saturday, and I'm already looking at a cross stitch sampler as a wedding gift for my sibling next year.

At times like this I look at my craft to do list and my reading list, ending up in a battle between doing some craft work and reading a book.  Not sure which one is winning just at the moment although with the Olympics on in the background its probably the craft work (but with coverage of sports like the men's cycling keirin, I'm not convinced any craft work happened with the suspense). 

I just need to resist adding anything further into my craft to do list or my reading list, both are long enough!

Flying Time

Well, I'm not quite sure where that time went... I had the third post all underway... and it never made it off paper.  When the chance came to get it typed up, it was another week and when I should have been doing a fourth post!
To say that the time has flown during school holidays - and the summer school holidays at that - is in itself impressive when we've not been away for the time to fly!
Although I do always try and have things to look forward to on my list of ideas of things to do and places to go, as much for my own sanity as my son's! 

So since the last post there's been what they deem the 'happiest day of the year', and I have to say - actually it was a happy day for me.  I took my son to the Steam Rally at Welland.  We missed the one last year and my son enjoyed it so much the year before that I had it down as a must do this year.
The smiles on my son's face and going on the fairground merry-go-round and Ferris wheel are enough to make me feel happy!  Listening to Grease and the Time Warp on the fairground organs just makes me giggle and I can't help but grin inanely!
The MonSter did follow me around as it had done that week but it didn't stop me (well I may have sat down at times rather than standing but that's more resting than stopping! ;-) )

I managed to make it out to a friend's for a catch up and a curry, but the MonSter wanted to play a game with the take away delivery... Would the delivery make it there before I needed to call it a night with fatigue and inability to maintain attention?  It was a close one, I can tell you! The delivery took over an hour and a half (on a Thursday night! - Now I'm not one to normally get deliveries and I would expect that on a Friday/Saturday night... but Thursday... really??!!) and to be honest I could have called it a night half an hour before the curry even arrived.  I refused though to give in and I kept myself going, the delivery arrived and we sat down to devour it, but then I had the predicament... just how long do you leave after finishing the meal before leaving?  Needless to say it wasn't that long afterwards I had to call it a night, and thankfully both my friends were very understanding about it.

There has also been my Tysabri infusion.  Initially I was unsure the best thing for my son,  I knew that a hospital is no place for him if it can be avoided but debated with whether I should call on friends or family to look after him.  I eventually decided on sending my son to football camp for the day.  It was great, my son loved it and it gave me plenty of time with no rushing around and no feeling guilty for spending the time to grab myself a coffee shop hot chocolate.
So far, I generally feel okay straight after the infusion and even managed a trip out the following day not letting the rain in the morning stop play.  

Friday started well with a trip to the woods on a hill (I LOVE the outdoors), but later that day I was wiped out.  Missing out on drinks with friends in the evening, struggling the next day and still feeling the effects of it all now!
Whether its because of the Tysabri, the MS in general or that it's that time of the month influencing the other two, who knows.  But that's one of the things about this MonSter, living with the uncertainty as unfortunately so many of us know.
I have had to take things easy but I have still been able to do things that I've been meaning to do - like getting a photo frame and lampshade for my son's bedroom.  I didn't quite expect to get it sorted this weekend, but at least I did something so that when its a good day I'm able to make the most of it.
Plus my parents took my son to his martial arts session and I had the luxury on a sunny (but not too warm) day to sit outside with a cup of tea, the peace and quiet, and my cross stitch. Bliss!

The MonSter has today had its moments and I can feel it, but there's a gem of living right by a bus stop into town, with a good museum in town and an exhibit that children can become involved in. Additionally going with a friend who takes us to discover FreakShakes at a local cafe! 

Its the small things that can make me smile.  The small smiles start of small but they do seem to grow in my heart.  

Summer, Pets and Going Off on a Tangent

Well I didn't think this through with when to start a blog!

Summer holiday, the time when there's less free time as the free time is taken up entertaining the little man, later bedtime (for him, not necessarily me!), coupled with a warmer time of the year (and like many others with MS there's that 'lovely' phenomenon of Uhthoff's syndrome).

I'm snatching some time whilst my son is at a martial arts session (I should really learn what course he's on - he's having fun though and that's the important part!) to try and pull together my next post. (Although it has still taken me a few days to actually publish the post.)

Whilst today is a cooler day there's been those hot days this week. Days when I'm glad the paddling pool is one with rigid sides so all it needs is water to hold up the sides - no wasting energy pumping up the sides.
The homemade iced tea with lemon juice ice cubes went down a treat and once a jug was made up all I had to do was pour.

This week I also attempted to find my guinea pig a friend (her sister died a couple of weeks ago). We had a road trip - well to a guinea pig it's a road trip - to the rehoming/rescue centre.
Two hours there meeting various sows and neutered boars we (the lady at the centre and I) came to the conclusion that my little lady may be happier on her own for now.
The question to be asked: does the owner take after the pet or vice versa or - now this is a bit out there - is there a draw to a certain pet over others because they're alike to their owners in the first place, personality and all?
The likelihood being we find similarities in life where we want to and pay less attention to those parts that don't fit our ideas. Like psychology says if something has emotional significance, we notice those occasions it's there. Just like suddenly noticing the new car (well same model and colour) you got - because it's not that common - everywhere.

But I'm going off on a tangent....
How are the summer holidays going?? Honestly, we're off to a rocky start. Am I dreading the six weeks? No... it's now less than six weeks! But seriously, no, the rocky start is behaviour that could happen any time of the year and we (My son and I) have the time to talk and discuss things through - as best as you can with a five year old - and hopefully (I live in a bit of dreamworld) end up in a better place at the end.
I did brave the supermarket this morning with my boy, we had tried to be there before 9am like a friend had managed the previous day with her girl. Why I thought this would happen I don't know, but we did make it there just after 9am. It was definitely the time to go, a lot quieter and manageable. I even had my own assistant to help load up the belt whilst I packed (namely my son), even if it did cost me... 50p!

As much as this week has been a test the MonSter in me has only reared its head with the heat but it hasn't stopped me!

Summer Holidays Survival Guide with MS

I've been meaning to post this for a while, but things just kept getting in the way!

I originally wrote this by hand after surviving the last summer holidays with a preschool child waiting to start his reception year, and it is time I actually shared it!
It may not be long until the summer holidays of 2016 start and my son is another year older with different demands this time during the holidays (like it being the one month that I have two infusions of Tysabri due to the way the 4 weeks fall) but never less hopefully there is some information here that could be useful! Plus it'll remind me of things to do this year!

The approach of the summer holidays filled me with dread, it was my first with the finish of preschool before reception start and at an age where the need for constant engagement and activity from start to end.
I started to really question why was I dreading it so, and the answer; because everyone else is saying it is something to dread, 6 weeks of our child/ren doing activities; plus the addition of the unknowing of MS.
From this thought I changed my mindset, what can I do so that my son and I get through the summer holidays?

• I created two lists (with hindsight a third would have been useful), one for ideas of more unusual activities to do at home and one for places to go (after the fairly damp summer I'd be tempted to split this list into indoor places to go and outdoor places to go).

          The places to go list meant I remembered places when people recommended somewhere to visit (great when memory becomes an issue), and when last minute changes happened I wasn't having to rack my brains for ideas.  

          

          The activities at home list meant I could stock pile my items in the store cupboard such as vinegar and bicarbonate of soda, wool, etc so it was all there when needed for an impromptu rainy (or sunny) day and no need to postpone the activity or having to rush out of the house to get the items.

• I planned activities and tried my best to space them out, there were activities which were date specific (like a festival) but being aware when they were happening I tried to restrict doing too many big day trips in a week to try and manage the fatigue.
  I found this also helped manage my son's expectations as each week there was at least one day trip to look forward to.

• It almost seems ironic but taking my son's friend with us! 
  Having a friend with him made it easier on me as he had a companion to play and entertain, whether its was a day in the forest or a trip to a local park or playing in the garden.
  (Plus there's the outside chance that the child's parents will return the favour and you get some rest time!)

• Remembering simple pleasures
   - camping in the garden
   - daytime bath (depending on the age of the children)
   - bus journey into town/city
  They were all big events for my son and I found it an easier time and less draining on me.

• Whilst looking for organisation activities, I discovered activities with the local library, the local Wildlife Trust, as well as the RSPB Big Wild Sleepout, Forestry Commission activities and the National Play Day.  I found this great as the activities and information was already there with minimal input needed from me.

• Looking through local websites/magazines I found money off vouchers or deals.  I kept these even if I wasn't sure they were going to be used as back up if our plans changed.

• I prepared a meal plan factoring in days out, so there was less decision making needed on days when even the thought of trying to think of what to do as a meal would have been difficult.

• Keeping my slow cooker out was a great idea! Instead of stews I would use it for pasta sauces, bolognese, meatballs, ragout and tagines.  Then all I needed to do was the pasta or cous cous, using fresh pasta (still shop bought!) at times as it was quicker to do than dried!

• Using home delivery for shopping.  What a great idea for shopping! No need to worry about my son picking up every item on the way round and the tantrums that can happen!
  I found I still needed to go the shops every now and then to grab something, so I had a shopping list and my son would have his shopping list to go round with.  When his hands went wandering we played a game of "put your hands on your [body area]", this worked great as I knew his hands were on his ears/tummy/hair instead of the shelves and he found it funny just playing the game.

There are things I found hard but remember don't be afraid to ask for help or say 'no'.  I asked friends if they could drive if we were going together somewhere.  

If I needed a rest day I said no to going the park and did something at home where I could sit down instead and not have the mental exhaustion of wondering just where my son is.

Heat is a challenge for me, so I have a list of ideas that work for me for hotter days; I know of a place in the forest with dappled shade and a stream, going to a swimming pool or making sure the paddling pool is out in the garden, or knowing where there is a lot of shade and I can rest.

One thing that can be the biggest challenge is how we place demands on ourselves! I'm guilty of this but am slowly learning not to be so hard on myself.  School holidays are daunting but by forward planning slightly I spread things out and made them more manageable rather than doing lots in the early weeks.

Pyjama and TV days were great when it all got too much! Or a trip to the cinema!

Asking friends if they can help with something was hard to do but I found they really don't mind (and the taking a friend of their child out works for them as well!).

Think positive about the holidays and hopefully there will be less "I'm borrreeddd' days!

As I said I wrote this after last year's summer holidays in my notebook.  And seriously I still have the list of places to go and ideas to do at home as they've been useful all year! 

I have even printed out a calendar this year for the summer so I can visually see what days events are on and when I have things organised with friends to help with the balance of the summer.
My slow cooker is still out and will be used over the summer!
The thought of summer holidays is still daunting and my son is a year older now which at their age makes a difference, but we will get through the holidays with a smile on our faces and taking the help when needed.

I'd love to hear if anyone has any other tips/hacks or ideas for their way to make the six weeks enjoyable and manageable!

Chez