Treating ourselves well.... Gluten and Dairy-Free Coffee Chocolate Cake-Pops

Once in  a while, when we are feeling particularly gloomy, I find it lifts the spirits to drag ourselves out of bed and do a little decadent gluten and dairy-free baking!  Anything with chocolate is always a good incentive and works wonders for the soul. This also creates an Activity, as I tend to encourage tween participation. Often, depending on how well they are feeling at the time, or how much energy they have, this falls to licking the bowls afterwards, and offering to eat the results... but it keeps everyone happy. 

These tasty morsels pictured below, Miss 10 had great pleasure making with me (possibly due to our new 'pop cake' tray, a new invention I discovered at a '$2 And More' shop.... but whatever works I say)!  There was just the odd M.E. moment, when the silicon tray flipping into her Epsom salts footbath (as Miss 10 sat with feet in agony, and greased the tray), but it raised a lot of laughter! After a good washing, the cake pop tray was put to action once more, and we recorded our instructions below.  Equally good recipe for just making loads of cupcakes if you don't have a cake pop tray! 

Here's our photo tempter, with recipe below:

Miss 10's Super Scrummy Cake Pop Recipe  - (Gluten and Dairy-free)

Ingredients:

-          3 cups gluten-free self-raising flour

-          2 cups of sugar

-          Big splash of vanilla essence

-          ¾ cocoa powder

-          1tsp baking soda – sifted to remove lumps

-          7/8 cup of margarine softened

-          1 cup lactose-free milk

-          4 average-sized eggs

-          1 cup of boiling hot coffee

Finishing Touches:

-          dairy-free chocolate chips

-          dairy-free chocolate hail

(or any other dairy/gluten-free decorations of your choice!)

Directions:

-          0 Heat oven to 160C (325F)

-          0 Grease the cake-pop tray with margarine or spray oil

-          0 Place all ingredients (except the Finishing Touches) in a bowl or food processor and mix     or blitz until just combined, and margarine is fully incorporated

-          0 Pour mixture into the prepared cake-pop tray (or cupcake tray), and smooth the top

-          0 Bake cake-pops for 10mins or until a toothpick comes out clean

-          0 Allow the cake-pops to cool in the tray

To Finish:

 - When you are ready to ice the cake-pops, melt a good amount of choc chips (e.g. 2        cups) in a bowl in the microwave, stirring every 20secs. 

- Dunk cake-pop in chocolate with ‘spoodily thing’ (spiral spoon)

- Insert sticks

- Place choc hail on baking tray (with baking paper on it) and put cake pop on top to dry

- Sprinkle additional hail over stick end.

Makes heaps and heaps (or approx. 16 cake pops and 3 trays of cupcakes).

Settle down, get cosy, and enjoy!  

If you try them... let us know what you think! 

Do you have any favourite decadent treats to lift the spirits a little? xx The M.E. Mum 

The morning after the day before......

Christmas. Or more significantly in terms of illness... Boxing Day.  The day where PEM (Post Exertional Malaise) hits people who suffer from M.E like a freight-train. Just the thought of Christmas... and the energy required to exude some sense of festivity,....can be enough to send the health of an ME'er, spiralling. Then there is the actual day itself.  Post Exertional Malaise is what hits us after. It is that sense of impending doom, of a sickness to the bottom of our stomachs, of exhaustion that can penetrate our bones...... this can be despite many happy memories the day before, lovely experiences, a thrill for our children, happy moments, tasty food. This is completely isolated. This is NOT a 'depression', because we are sad. This is a direct and hard-hitting response to having over-exerted, if not physically, emotionally. THIS is part of M.E. An invisible part of an invisible illness. It can have a delayed action, and can hit for hours/days after. This is the time when MEeps (people with M.E) need gentle support and care, time to rest, and to find their strength to get through. 

Yes we love the photos if we have them! We (often) love the memories if we have experienced those too... but now, out of love, please give us quiet time to gather our strength to push through our Post Exertional Malaise. (A bit like giving birth, getting through the last bit is the most important).

With loving hugs xxxxx

Just another Friday...

Another Friday has been and gone in Miss M.E (12)'s world. Another day too ill for even the half-hour visit from her home tutor who comes twice a week.  Children with chronic debilitating illnesses have a lot to ponder. They do not have the activity and excitement of healthy children, the distractions of school, and depending of the nature of the illness (e.g. M.E), the ability to walk around the block or to ring a friend for a chat.

Lately it has been playing on Miss M.E (12)'s mind about what is ahead for her in her future. It is nearing the end of the school year here, and it's been a year when she has done the equivalent of about five full days of school. She spent a whole term getting dressed in her school uniform, and the energy required for that along with a shower the night before (or that day) was enough to debilitate her too much from attending school. This is no basic fatigue. This is bonecrushing, nauseating, head-spinning, brain-fogging, co-ordination and speech-effecting, fatigue that is constantly there but hits even worse out of the blue from time to time. It is hard to watch a child hurting herself constantly doing the most basic activities like walking through a door, never being able to find the right words to hold a conversation, and frequently unable to finish her sentences.. or follow her own train of thought... her brain just gives up. She is mostly housebound, and any outing no matter how small is considered a huge achievement - but comes with payback of days of increased illness afterwards. Her world is very, very small. This is the child who a couple of years ago had already been showing the early signs of M.E (there is a genetic pre-disposition if a parent also has it), but who was still able to do one hour of hip-hop a week which she loved dearly, able to visit friends or go to the movies if she felt well enough, and was mostly attending school full-time which she also thoroughly enjoyed. She excelled in all her subjects and was always rated as a friendly and compassionate class member.


Today she asks if she will ever be well. If she will ever be able to go away on holiday again (car-trips exhaust her). She is looking forward to the Christmas holidays because she won't have 'the stress' of feeling she should be at school - even though she has not really been at school all year.... She doesn't talk of Christmas... the stress and adrenalin of Christmas is not necessarily a good thing for those struggling with M.E. We will be making it as low-key as possible, while still trying to make it seem somewhat festive and special to her....


Yet Miss M.E. (12) is by no means alone, nor is she one of the most severely-affected child/teen/young adult.  Many are unable to eat and have feeding tubes, unable to stand the stimulation of light or sound so remain constantly in a darkened room with limited interaction, nauseous at every slight movement and in awful bone-aching pain for huge lengths of time on end.


Today I am reminded of Karina Hansen, a young Danish woman ... who is today spending her 25th birthday in a Danish hospital, held against the will of her and her parents... She has been kept there 8 months, forced to do treatments that are detrimental to her ongoing health, with archaic believe systems around M.E as a psychiatric illness...  when there is strong medical evidence that it is a neurological auto-immune disorder. My heart breaks for her and her family and the dreadful ordeals they have been through and are continuing to go through.  Best wishes and birthday blessings can be sent to her via this facebook page: https://www.facebook.com/JusticeForKarinaHansenand messages to add your support to her and her family. I encourage you all strongly to join the page.  A more complete explanation can be found there, and also ways to donate towards M.E. research, for a better future.


Sending you all much love and blessings
xxoxx The M.E. Mum

What is M.E anyway??

If you have M.E, you've probably come across the well-meaning reassurances .. you know the ones: "Oh, M.E, my cousin has that!" or "Is that the same as M.S?" or "Oh, that... just feeling exhausted ... I have young kids and get that feeling all the time!" and the best one of all.. "Oh, my friend had that and changed her diet and stopped work for a year and is fine now!!".  (My daughter gets "Oh it'll just be because she's going through puberty").
 
M.E. (myalgic encephalomyelitis)  is a chronic debilitating autoimmune neurological illness, often triggered initially by a virus or overload on the body, which it never fully recovers from.  People with M.E. suffer overwhelming fatigue, enough to make you nauseous 'sick to your bones' as I've sometimes described it. There is post-exertional malaise after any form of activity - whether it be physical exertion or exertion from interaction with others. Muscles often become painful or heavy, making walking difficult and a certain sense of paralysis. The fatigue can be too overwhelming to eat/digest meals, there is a heightened sensitivity to noise and light. Fatigue can also hit us cognitively which can interfere with the ability to work or go to school or to chat coherently with others. It is almost as though the messages refuse to go through to certain parts of the body. The inability to go out much or to carry on with normal activities can make us very isolated. It is like permanently living with glandular fever, and we have very unrefreshing sleep - you wake feeling as though you've been hit by a truck! There are different 'baseline' levels of M.E, and some people are able to function more than others, and continue with an element of working or social life, while others have had to stop work or schooling and often lose their friends and hobbies, sometimes even families and housing. It is a terribly soul-destroying and debilitating illness. Some are housebound, some bedbound, and some hospitalised and requiring tube feeding - living with M.E. can be like a living death.  The illness may fluctuateand even if you have one 'good' day, many bad ones are likely to follow.  Most of us have tried almost every diet or supplement or treatment known to man (and it's not helpful to hear of more 'cures', it becomes disheartening after a while)... as yet, there is no cure for M.E.  Regular doctors often advise that the best we can do is 'manage the illness' through rest, pacing, painkillers, and sleeping pills.
 
Please do still ask us how we are! It's hard for us to answer, but it's nice to be asked.  I like to hear what you and your family have been up to. It is hard to be able to guarantee that we can stick to plans, but it's nice to be included in them. My favourite way to be contacted is thru text or facebook, (since phonecalls are very draining), but it is lovely to stay in contact. I really value the friends over the years, who have in the past so kindly brought us a meal, texted, helped with organising the house, offered to drop the children to school etc when I have been unable to, and invited the children over to play.  They are absolute gems. There have been times when I have been undergoing treatment (chelation for heavy metals etc) where I have barely been able to raise my head or have the energy to swallow. Friends at some of those times have been an absolute lifeline. I even had a friend in Vietnam offer to order us a pizza online. Bless her, what a wonderful wonderful gesture. I suffer from M.E, and now also have a mostly-housebound/sofa bound daughter who has M.E (there is a genetic pre-disposition) which makes things doubly complicated and yet more isolating as I am her full-time carer and struggle with M.E. myself. Over time, friends tend to drop off and family steps away, and that is where facebook becomes more valuable to us for social contact.  Many people are very very isolated, even though they used to have busy and fulfilling lives, caring for family and friends.  If you are a friend of someone with M.E, these are all very valuable, practical ways that you could help! Please don't be a stranger!

I hope this has helped give you a better understanding of M.E and its challenges? Please share with your friends if you find this helpful as an insider's view.

Do you suffer from M.E. yourself? Is there anything else you would add?

Love and blessings xxx

Built-in best friends!

I love the love and laughter in our house... faith, love and a sense of humour are some of the most important family values in our house, it really keeps us going.  I snapped this giggling time last night while eating dinner, my girls snuggled up together in their onesies on the sofa, totally cracking each other up lol ....  they are so lucky to have each other, we are forever counting our blessings.  Built-in besties :).  #lotsofbeautifulfamilymoments

Life with wheels..

I haven't blogged recently, I haven't really felt I've had much to share. Things have sort of been spiraling downwards for Miss M.E. (11) and it's often hard to talk about. 

In the weekend, however, there was an occurrence that made my blood boil. (Gotta love an infuriated mother blogger, right?).  I'm sure many of you who struggle with mobility will have had a similar thing happen......  Miss M.E. (11) had mustered all her energy and decided that she would try to go out of the house, for the first time in weeks, to one of her favourite shops in her 'prior-M.E' life. I loaded up her wheelchair, and we headed to the mall where her favourite teenage clothing shop was. The seasons and fashions had changed since she was last there, and there was lots of new stock. But do you think she could fit her wheelchair down the aisles without hooking clothing off the racks accidentally? Not a chance. The items were all mounted the whole height of the walls, and predominantly inaccessible. Each aisle would require backing out of as we would hit a stand loaded with clothing jutting out across the paths. People were everywhere, but no one offering to help - poor Miss M.E. (11) was awfully embarrassed.... I showed her a pretty top and suggested she tried it on before we left, so that at least she had found something - but after waiting for a long time in the queue for the changing rooms, it turned out there was someone (able-bodied) in the disabled changing room.... she had to reverse her wheelchair out of the queue and line herself up to the side to wait... It all became too much, she was absolutely shattered and begged for us to leave. We left empty handed and thoroughly discouraged.

I stopped off at one of the cafes in the mall and asked if they did anything dairy and gluten-free... nope, she couldn't even eat. Finally made it outside where I was able to buy her some caramelized nuts for her efforts, which she had gratefully. She arrived home aching and in pain, her legs throbbing from being in the wheelchair, and collapsed into bed exhausted.

I imagine it will be a very long time before she ventures out to the shops again.....

If she is well enough in the future, perhaps I will encourage her to write a letter to the store....

The silver lining

Today was a good day!! A really good day! It does my heart good.

I was unable to get up until about midday, and Miss M.E. was up but not at 'em... but I decided to hitch up a 'treat' for her with my hubby for an hour in the afternoon - a wee trip to a quiet arcade, where they could play slot machines, try to claw up some prizes, race each other on stationary motorbikes. It's not something we would normally do, which made it all the more fun.  We kept it all very hush-hush prior ... and she was very anxious to know what her surprise might be! It had been months since she has been well enough to go out with friends etc (or even well enough for school) and it is hard to find a suitable activity that doesn't require any strength or energy but provides a change of scenery from being housebound.

They had a fabulous time.

When she came back from the spacies arcade she was full of information about the tickets, the Sponge Bob soft toy they had won (and the strategy used), the airhockey game they had played together.

They were gone for approx an hour, and she has been resting since, I'm hoping the post-exertional malaise (PEM) won't hit too badly.

So pleased to have found something to suit her :). A wee glimmer of light for her to be able to feast off for the next few weeks :). Nothing is ever simple with M.E - it's all about strategy and pacing........... and hoping for the best.........



Do you have any fun hobbies/outings that you like to do when you feel well enough? Any energy-saving ideas or treat outings? xxxx