Chronic illness/ Chronic pain code for what we say and what we actually mean!

Most of you will know by now I have ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome), Fibromyalgia ( widespread musculoskeletal pain) and more recently Joint Hypermobility ( in hands- when joints can dislocate!). I have had chronic illness and pain since 2009 and even with high levels of pain medications including morphine I still experience pain 24hrs a day, 7 days a week and 52 weeks of the year. In truth, I cannot remember certainly in the last 7 yrs or so of a time when I have been pain free. I read recently that the full list of symptoms of an ME or Fibro patient is the same as a patient with AIDS around 2 months before death! The most frustrating thing about my condition is that it is completely INVISIBLE. There is nothing to see, no bruising, no swelling of joints in my case, no identifying marks on the skin………….NOTHING. BUT MY BODY IS WRACKED WITH PAIN DAILY.

Now that may be hard to believe – how can someone be in pain all of the time even with very strong medications? A normal person’s brain is not equipped to understand chronic, consistent pain at all. Yes they can totally empathise if someone breaks their arm, or has the flu or even something like appendicitis because naturally our brains can understand what’s seen as danger or acute pain –  pain that will be there until that body part has healed itself…………short term pain. They can imagine from past experiences how painful those things could be, but the normal brain is not equipped to understand a pain that does not go away! It’s just how we are made- and therein lies the problem.

Therefore, as you can imagine this can be the cause of all misunderstanding around consistent pain. People think it’s actually not possible to be in pain for that long or believe that it never goes away. They see us ‘spoonies’ up out of bed and dressed and dare I even say it, possibly even with make up on and possibly even smiling and chatting!!! I mean c’mon if you are in pain would you even be doing that?………………..ERM…………..actually yes sometimes you would! Not because the pain is reduced that day or any less severe, but more so if you didn’t make the effort ( and believe me you have no idea how much fecking effort that actually takes when you feel like death!) you would never leave the house or see anyone!

Then once you have a chronic condition like that when anyone asks how you are- they aren’t fully listening or really wanting to know simply because most of the time they don’t understand it, think you are exaggerating or even lying about the severity of the condition. As time goes, on I can tell you, that you definitely find out who your true friends actually are. Having to cancel going on a night out does not go down well once you’ve done it more than once. The invitations to go out or do anything start drying up because if the venue is somewhere where there’s dancing to be done no one wants to be the one stuck at a table keeping you company! If its a day out with a fair bit of walking your invitation gets ‘lost’ as no one wants to be lagging behind walking at your speed rather than be with the crowd. Believe me it happens………………………………I’VE BEEN THERE AND GOT THE T-SHIRT ON THAT ONE!

You learn very quickly that when people ask how you are they are generally being polite and I can tell you most spoonies will answer ‘I’m fine’ (which generally means I feel like death but with a pulse!) and the conversation will quickly move on to what they’ve been up to.

So, I thought I would do a quick reference to what we say and it’s translation to what we actually mean- you know just for the laughs!

I’m Fine!

Like I said above this is the general term for I feel like death but with a pulse- but I have made the effort to get up and dressed to either meet up or go somewhere.

I’m a bit tired!

I literally cannot hold my own body weight up, it feels twice it’s normal weight but I also feel as though I’m wearing a pair of lead boots walking through a swimming pool of treacle whilst someone is pressing down on my shoulders with their own full body weight!

I’m a bit sore!

Feck me I think I’ve just done 10 rounds with Mike Tyson then been thrown out of the ring to be run over by 2 double decker buses and then been set upon by a pack of feral wolves…………..DON’T FECKING EVEN TRY TO TOUCH ME (OR EVEN LOOK IN MY DIRECTION)!

I had a rough day!

ALL OF THE ABOVE…………but now I feel sick, have a migraine and cannot even swallow food or fecking blink……………so I’m unable to get out of bed, the blinds are closed, earplugs are in as noise sensitivity is through the roof. Just check me occasionally to make sure I’m still actually breathing!

So if you have a friend or a family member who has a chronic illness and suffers with chronic pain, then PLEASE recognise the above standard phrases and REMEMBER what they actually mean. It could make all the difference to our day. If you look closely enough you will probably notice that  our smile we plaster on our face is not reaching our eyes…………..look closely next time.

HOW ARE YOU TODAY?

Fibromyalgia pain management help on the horizon at last

Any of you that have been following me for a while will know that I have ME and Fibromyalgia, which in lay mans terms means I am permanently exhausted and have constant chronic pain (with lots of other symptoms but the list is too long to mention!).

I was diagnosed in 2009 and after being initially referred for a 12 week management program in London at the start my Borough decided they would not pay for me to go out of borough for treatment even though there was nothing similar in my area. So, after being diagnosed  I was then left with no input apart from pain relief from my GP. I spent years on Tramadol until my body totally adjusted and they were having absolutely no effect. Last year when the pain became to difficult to handle my GP switched me to Morphine (slow release) and Oramorph for breakthrough pain during the day. Again as my body adjusted they had less and less effect and the dosages where increased to a point where my GP could not authorise another increase without referring my to a Rheumatologist.

This was probably the best thing that could have happened. I had an appointment in February and she confirmed 18 tender points of Fibro around my body alongside all over body tenderness ( that means my body feels bruised so wearing clothing/ shoes etc all hurts as though someone is pressing directly on a bruised piece of skin!). From there she referred me to the Fibromyalgia clinic and I had that very long appointment yesterday. It takes all afternoon as you see three separate specialists in different areas who all work together to approach the illness from different angles.

I came out feeling amazingly positive after speaking to three separate specialists who not only believed I was in pain but understood how it affects my daily life and had input in how they could, together as a team, help me manage my pain better and help me restore some normality back to my life.

THIS IS HUGE!! For years I have been left to cope with only inadequate pain relief ( turns out opiates are useless in treating the pain I have-typical!) with people finding it hard to actually believe I am in CONSTANT pain. I know I am my own worst enemy as I do not allow anyone to see how it affects me. If I go out no-one would even think for a moment that my body is screaming out in pain, I will smile and chat and completely mask it ( hence some people think it’s not possible to be in pain ALL of the time). My only visible show that something is wrong is that I use a walking stick, not because I bloody enjoy people looking staring at me but because the pain in my ankles is sharp and knife like and can literally knock you off balance when out walking around.

This denial, or masking my issues seems to be part of the problem. If people think I am OK I will carry on as normal doing things I know will knock me off my feet the next day just so no- one sees I cannot cope! Apparently I need to learn to say ‘No’ and totally understand how to pace activity. This is new to me too as I totally live my life the ‘boom and bust’ way, that means on days where I am more able I will do WAY too much just to catch up etc which then pays me back with several days not able to do anything at all.

So, after an extremely long hospital visit to the clinic yesterday they offered to put me on a 7 week pain management course which looks at all these issues alongside getting a combination of medications that actually work with a routine of pacing.

This is the most help I have had in all the years I have been diagnosed. I feel positive with everything they were telling me and I now have to just wait to hear when the course will be starting. Although it is 7 weeks long it is only 1 day a week at reasonable times with lots of breaks etc. I will meet other people in the same position who actually live in my area too which could end up being a bonus socially.

I have been on support groups online throughout having the illness but I tend to find they become quite depressive with people venting every little aspect, pain, new symptom and bad day they are having. I too have those days where it can bring you right down in mood, but that is not how I want to live my life- it is restricted enough without wallowing in what’s wrong instead of concentrating on what is going well. So, although I remain on these groups I tend only to comment on positive posts because I do feel that sometimes when I am feeling OK they can have a draining affect on your mood as you start to think ‘Oh God is that how I am going to become’. I am not running these groups down they do provide people with daily contact and reassurance and generally are a good thing, however, it can become a bit of a pity party some days and that’s not how I want to look at my illness. I know some people will say they have been on the course I have been offered and it did nothing for them and that’s fine, but because a lot of how you manage pain can be down to mindset as well I do not want to go in with any negative attitude- otherwise what is the point?

So, I will keep you updated when I do start and let you all know what happens. But for now I am very happy I am getting any help at all and we have to be prepared to help ourselves as well as the illness is complex and cannot just be fixed with a particular medication or procedure. So send loads of positive thoughts please, I am feeling that my outlook is going to be rosy.

 

Eating Out- without breaking the diet

Over the years whenever I have started a diet or healthy eating plan I find myself extremely determined and aggressive at the beginning, meal prep and enthusiastic organisation takes over when the determination is strong. Inevitably along the way, like most of us, life catches up and we find ourselves at the office without lunch as the kids were running late for school and there just wasn’t enough time, or getting home late from work with no dinner planned. This is usually the part where we give in to ordering takeaway, allowing the cravings for pizza and carbs to consume us. If we look at eating out in a different light, perhaps those crazy days of no meal planning won’t result in diet ruin.

  1. Know Before You Order

Practically everything is available online these days, and this includes calorie information for your favourite go-to takeaway restaurants. Before placing your order, quickly check out the portions and the calories in order to make an informed decision.

  1. Substitute More Greens

Most restaurants offer a standard side dish that includes carb-driven chips, rice, or potatoes. Although alluring, next time your main entrée includes a side, opt in for a greener vegetable instead. If you are getting Indian cuisine delivered to the office, perhaps a side of curried spinach or a house salad with your lamb Dhansak to complete your delivery order.

  1. Portions Are Everything

It is not rocket science; the portions you receive from most takeaway places are much more than what you would prepare at home. This is particularly tricky when a restaurant posts calorie information “per serving”, which is often half of what is in your container. If you are given a mountain of food, immediately portion it out and put the other half away – out of sight, out of mind.

  1. Eat Slowly

Listen to your mother – don’t wolf down your meal! We get it: you are hungry. The faster you shovel in the food, the slower you have time to digest and “feel” how satisfied you are. In obvious terms, this results in overeating. Another useful tip is to stop for a glass of water here and there – not only does water play a vital role in your diet, it also fills you up!

  1. Modifications Are Your Friend

Most restaurants allow order customisation in order to accommodate diet and allergy requests. This can include ingredient substituting or omission, preparation methods, and sauce selection. If possible, ask your restaurant if they are willing to swap the double cream for a lighter dairy or the sodium-based sauce for a lighter dressing. Simple switches can help more than you know!

Since I started my Slimming World journey in August this year I have learned that it is all about making the right choices. You can have the takeaway or dine out in a nice restaurant but you do need to be aware of what is on offer and what is the best option while still treating yourself at the same time. Do not be afraid of asking for the dressings to be separate, or asking for a salad instead of the normal carb filled sides. Eating out with friends and family, or even a weekend takeaway needn’t be the end to your healthy eating plan. Look at the menus beforehand so you are aware of what is going to be available and know what you are going to order before you get there. With takeaways such as  Indian or Chinese opt for plain boiled rice instead of fried rice, order a side of vegetables and have a smaller portion of anything that is seriously going to knock you off your diet and help you stay on track.

Eating out should not be the death sentence to your diet goals. Following these few simple suggestions will rid you of any takeaway or dining out guilt and keep you on track.

‘Papa Don’t Teach’ – Would you teach your teen to drive?

Now if you asked me this a few years ago my answer would have definitely have been yes, that would have been because I was then working as a qualified Driving Instructor as a job and obviously had a suitable car which had duel controls. In fact it was something I was really looking forward too. I no longer work as a driving instructor due to my long term illness and so I am now looking at it purely from a parent’s point of view.

Therefore,if you ask me that question today, the answer is a resounding NO! In fact, just today I have booked him to start his lessons with a reputable company and instructor. Many of you will think this is madness to throw all that money away on lessons even though I feel I could teach him no problem but I would only do so in a suitable car with duel controls, believe me I speak from experience that learner drivers  try to kill you on a daily basis when they are only starting.

Then throw into the mix that you are the parent. You know, the parent who see’s that they live like a slob, cannot cook for themselves and that they NEVER do as you ask them to do. Then you expect them to listen to you just because you are going to teach them to drive in your precious family car…………….RECIPE FOR DISASTER RIGHT THERE PEOPLE.

As a previously qualified instructor, I went through rigorous training so that I learned very quickly that a teen learner driver will take everything you say literally, so do not be shocked when you tell them to turn right and they end up in someone’s driveway ( because they didn’t realise you meant ‘the next right’), or that they cause you whiplash as you told them to slow down so they slam the brakes on because they thought they had to stop right there and not at the give way at the approaching junction. These mistakes are easily dealt with when you, as an instructor can take control of the car to ensure you do not get whiplash or cause an accident and therefore have the patience of a saint!

As a rule instructor DO NOT shout at their students however, as a parent driving my family car with my learner teen at the wheel I can see where parents teaching their own teens is a much more stressful situation. Instructors have a certain way of explaining things, we have been through our training sessions where our ‘instructors playing trainees’ will take everything you say literally and believe me as an instructor you learn VERY quickly what NOT to say to a learner. Come on most of you will have seen Sky’s Driving School of Mum and Dad where they draw on Sandra Dodson’s experience, who also is former deputy chief driving examiner at DSA, Driving Standards Agency to point out how things should be done.

Now don’t get me wrong, I am fully aware of how much driving lessons cost and I can see as a parent I can see how you could question how or why they cost what they do. Then just look at it from the other side, that instructor has undertaking the rigorous training programme ( and believe me not everyone is cut out for the job!). They are also providing a suitable learner car complete with dual controls for the safety of your teen, themselves and other road users ( something that you could not even contemplate pricing on insurance). Your teen learns in the correct way at their own pace ( as everyone can learn differently) and then they have the same car to take their test in so everything is also familiar to them. The instructor will have visuals to explain any manoeuvre they need to learn  and teach them the safe way of completing it ( don’t forget a parent may have been driving for 20 years and have an huge repertoire of bad driving habits that they could automatically pass on).

So before you take the plunge just take a look at this video produced by Carfused.com after a recent survey of how a stressed learner is a very distracted learner. Also look at how the Dad instructs his daughter as opposed to how Sandra does……

Papa Don’t Teach- Carfused

So take it from me, someone who has been trained to actually do the instructor’s job and just think twice before letting your little prince or princess into your precious family car with no dual controls and then expecting them to A) listen to you and B) not misinterpret what you actually want them to do. Look at the cost of the lessons overall, and then the cost of possibly replacing your car (if they are unfortunate enough to cause an accident) and then the insurance premiums afterwards………………………..I know which I would prefer!!

Have you taught your teens to drive? I would love to hear about your experience.

My teen gets an ASD diagnosis at 17

This is what we have been going through recently. My eldest has always shown Asperger traits throughout his growing up, but has been very high functioning that it has never been a major issue to him or us as parents. He noticed himself after being at secondary school for a year or so that he ‘seemed’  different to his friends, that’s also when his lack of management skill came into play big time and and we had a discussion with him then to see if he wanted to pursue it further and get a diagnosis. At that time he said no, he didn’t want to be labelled different or have any spotlight put on him and so we helped him along with the school to get him more organised. It has also not hindered him in any way with friends, he has some great friends in the last few years that just accept him and his sometimes ‘odd’ ways and in fact it was one of those friends who encouraged him to go to his GP for help.

However, as he got older and then headed through the pressure of his GCSE’s it started to take it’s toll resulting in high levels of anxiety (which we were totally unaware about as he hid it very well under a laid back exterior) which led to a secondary period of ‘low mood’. This is when he as a 16 yr old then made an appointment with his GP and went off to discuss his ‘depression’ before telling us that he had gone and they were going to follow it up with a referral to our Children’s and Young Adults Mental Health clinic. We have supported him in his decision fully and have found out from our consultations that this high anxiety and low mood is very common in undiagnosed, high functioning, ASD cases in teens. They get to a certain age and then start to feel socially awkward and uncomfortable in a time that is turbulent for most teens anyway! This leads to the high anxiety resulting in a secondary ‘depression’.

We have since then been through the necessary assessments and he got his official diagnosis over the half term. I have emailed his Head of Learning at school to inform him of the diagnosis and arrange a meeting to see what help ‘if any’ he can get in his last year of A levels. There is an urgency to this meeting from my point of view as he has his UCAS forms to send off very soon and they need to know his requirements from school.

What I need to know is what sort of things he could be entitled to from others who are in this situation. If, at the very least, it would be nice if he qualified for some extra exam time, as his writing is atrocious and that could take the pressure of time off him as 2 of his subjects are essay based and he struggles to make his handwriting legible!

I would love to get some ideas from people in the same situation so I have an idea of what I should expect or not when I do get a school meeting.

Can you help?

Fifty shades of……………….what exactly?

Ok a bit late to this one but I am still seeing all sorts of ‘anti’ 50 shades stuff over social media.

Firstly,  I will admit that I am going to go see this film ( this week hopefully) and I have read ALL of the books ( my views on these you can see here) so you can judge me right there if you like.

Secondly, I DO get the ‘domestic abuse’ issues/ angle totally and can only imagine what a living nightmare it must be to find yourself trapped in that situation.

However, that said I am a 44 year old woman who has been married for almost 21 years, I have two teenage boys and feel that I am sensible enough and have enough ‘life’ experience to be able to separate a so called ‘romantic fantasy’ from an actual real life ‘loving relationship’.

I know there are people who will see these books and film as being what ‘real’ romance or relationships should be like. The ‘excitement’ and ‘obsessive control’ being mistaken for what love is. But surely that’s where we come in as parents ( for our teens at least). As I mentioned I have teen boys aged 14 and almost 17 years old. Surely one of my parental roles is to show them what a ‘normal’ loving relationship should be like. So, whether married, or in a long term relationship, same or different sex it doesn’t matter in my eyes provided the relationship is stable, consensual, equal, respectful and loving. I think that’s what’s important here.  Obviously there are those who like to live unconventional situations in which BDSM is part and parcel of their normality and again that is great providing it is consensual and no one is in danger obviously. Let’s face it the world would be pretty Stepford Wives and boring if we all liked the same things, had the same opinions and lived the same way.

So with my boys I will aim to teach them that they should take a responsibility to practise safe sex when the time comes for them both, covering both unwanted pregnancy or STD’s for either party. Also I think it’s important that we teach them that what they may see in pornography films or magazines is a far cry from what a real loving relationship is like. I will as the only female in the house impress on them to respect the opposite sex and treat others how they would want to be treated themselves. They will experiment as they get older I am sure but hopefully they will learn to see what they are comfortable with and what they need from a relationship.

With all the talk around this film at the moment I will make sure my eldest is aware that your average old married’s do not all have a hidden ‘red room of pain’ locked away in the house somewhere! Let’s face it Hollywood will romanticise anything from war or sex to relationships or jobs to bloody vampires and zombies and everything in between. But I can see also how teenage girls could be taken with the ‘excitement’ of someone who ‘loves’ them so much they are almost stalked and totally controlled. I don’t have girls but I know my close friends with girls would be making sure they didn’t allow them to fall into the trap of perceiving Hollywood romance to be what’s expected in everyday life. I adore the horror genre of films but I do realise that vampires and zombies are NOT real ( although in saying that I would be EPIC in apocalypse- just saying).

I do not want to seem flippant in any way about domestic abuse which I have been very lucky never to have experienced myself or know of any of my friends who have, however, I do not think that’s what the film/books are fully about. Yes they are graphic in what they take part in but surely one of the main threads is that Christian Grey actually starts to change and become reliant on her love over what he had experienced on the lead up to their meeting.

So what I am saying is that of those of us who ‘choose’ to go and see the film or read the books should not be hounded, shamed or ostracised as though we do not take domestic abuse seriously. Our choice is exactly that- our choice. We may not be condoning or advocating either side of the discussion but merely happy to escape work, family or stress for 90 minutes of total Hollywood escapism with the gorgeous Jamie Dornan thrown in for good measure. Let’s face it we all adored him in the brilliant The Fall where he was a fecking murderer for goodness sake.

The great thing about the film is that it has us all talking, whatever the views, surely that can only be a good thing raising awareness of domestic abuse but also opening conversations about teaching and educating teenagers of what is considered acceptable or not in a long term loving relationship.

fifty shades

When did 16 become the new 18?

 

I have certainly noticed this recently as I have a son who turned 16 in April and the trend seems to have appeared where the parents throw their little 16yr old cherubs a party at home, complete with alcohol.

First of all I didn’t do this and my son was very happy to get a load of his mates together for a boys day out paintballing. However, he has recently been to one or two of these parties although one was for a 17yr old. Second of all I don’t really think it’s appropriate to be encouraging your 16 or 17yr old son or daughter to drink accessibly in your house. You may be able to trust your own child but really is it a good idea to let all their mates loose in your house with alcohol at the ready.

This has made me think back to when I was 16 ( which is many, many moons ago now!). I remember going out with my friends acquiring a bottle of cider that we would all share and then make my way home, scuttling to my room before I had to face my parents hoping they didn’t realise I had been drinking. We used to sneak a drink is what I’m getting at, I was never allowed to have a drink at that age at home regardless until I was actually 18 and I was certainly never brave enough to ever get blatantly drunk at that age! When you turned 18 that was when you would maybe have had a party and obviously the big thing was that you could actually go up to the bar and order your own drink!

So for this era of teens everything seems to be getting earlier and earlier, almost to the point of what on earth do they have to look forward to.

Now I used to be of the opinion that I would not supply my son with alcohol nor would he drink underage in my house. However, a year or two ago I did attend an event by Drinkaware which concentrated more on teaching your teen to be sensible with alcohol. I mean they may see you drink your glass or two of wine at night to unwind, or get drunk at family get togethers or parties, therefore it made more sense not to do one thing but tell them another, but to teach them responsibility around alcohol.

I know everyone will have their own opinion on this but it is less of a black and white issue these days. I have been lucky so far as my eldest hasn’t seem in a hurry to have a drink or get drunk but I know my youngest who is 14 will certainly be a different story, so I am at least hoping to gain some experience via my eldest and have learned by any mistakes I may make with him along the way.

For now though I feel lucky as my eldest who has started going to more parties has openly said there will be alcohol there and that some of his mates will be drinking. We offer him a lift there and back and are on the end of the phone waiting for any problems. We have told him at any of these parties if anything occurs and gets out of hand he is to go outside and call us to come and get him. He also made us proud a few weeks ago when he went to his friends party and ended up looking after another of his friends( who had actually lied to his parents about where he was going) and then they called his mum to come and get him as he was starting to get aggressive due to drinking too much. I certainly would rather know where my teen is and what he is doing and at least be prepared than be the mortified and furious parent who is called to come and get my son due to him being ‘plastered’! We did have a chat about what had happened and I did tell him they had done the right thing phoning the boy’s mum. It did lead on to a great conversation about how easy it is for that age group to quickly overdrink and feel the affects afterwards, which they are unable to control.

What is worrying though is when will 14 become the new 16!

** NOT A SPONSORED POST** I just wanted to spread word about their website which has lots of great information. For more go to drinkaware.co.uk

Can we have Remembrance day before the commercial Christmas advertising madness?

First of all don’t get me wrong I LOVE CHRISTMAS! I really do, my decs go up at the start of Decemeber and my teens still get their own filled advent calendar and we watch all the Christmas films going, and my youngest also has the Christmas music playing continuously.

However, with all the talk over the new John Lewis TV advert and all the other large companies following suit with theirs I have become unbelievably annoyed.

It is Remembrance Day this Sunday with the actual 11th day being early next week, so why Oh why are we inundated with bloody Christmas adverts already. Ok I’m also guilty of getting sorted for the season early, I have my cards etc and am making my lists for pressies and have already started buying all my festive chocs etc. I know some shops even have had their Christmas stuff in and on sale even before Halloween, and I realise there is a huge commercial value for businesses on the lead up to the big day. I have no problem with the shops gearing up for the Christmas frenzy that would never be changed ever.

However, I do object to the showing of Christmas adverts before we have even had Remembrance Day! I may just be in the minority here but I really don’t care. Having been in the Royal Air Force myself along with my OH I feel unbelievably strong about this. The British legion do their best every year to raise as much as possible along with showing respect for all the fallen brave men who died for us to have the freedom we enjoy today. Almost everyone will have had a very distant relative who fought in the wars for our behalf.

Now I know there is no real commercial value to Remembrance Day ( apart from what is charitably raised) and that this year to mark the 100 year anniversary the ceramic poppies at the Tower of London will have gone a long way to raise awareness, allow people to pay their respects while also raising a phenomenal amount thanks to those who were lucky enough to buy one.

So why does it feel as though it is being forgotten amongst the Christmas commercial mayhem? It is the 100th year anniversary as well so is certainly extra special, and just because it’ goes back to remembering the 1st World War doesn’t mean we cannot also remember all of those who have in recent years lost their lives in places like Afghanistan, something that is very close to home for many people, as we do every year.

So please what is 1 weeks difference between releasing the special Christmas adverts by companies this week or waiting until the 12th November out of respect? Surely people will still be buying their Christmas pressies and goodies from the shops but at least it will feel as though major companies are showing their respect by leaving the adverts until after Remembrance Day!! Even by doing so there is still a huge lead up to Christmas Day, plenty in fact.

Each poppy representing a fallen soldier from the war!
Each poppy representing a fallen soldier from the war!

So, am I in the minority here?

 

A2 Milk Review

As many of you know I have M.E and with that brings symptoms of IBS unfortunately. This can be a real pain as I am a total latte addict and literally cannot walk past a Costa without buying my favourite vanilla latte as a treat. But as you can imagine this occasionally has unpleasant consequences ( I’m sure no more detail is needed!).

So when I was approached to try this new A2 milk I thought I might as well give it a go. Now apparently this milk haven’t got a certain protein in it that would appear in normal milk that can have a nasty affect on your digestive system. I found out that they dell it in my local Tesco store which although I don’t normally shop there I thought I would take a trip and check out this milk.

DSC_0115

First of all I took a note of the price and a 4 pint bottle is priced at £1.99 so it’s a little more expensive than normal milk. I was lucky enough to have been sent vouchers for enough for a 2 week supply as they were trying to get people to switch for a 2 week period to see if they could feel the difference.

This meant I could have my porridge in the mornings and my homemade latte’s during the day ( a total weakness of mine!).

 

My Favourite- warmed milk with an Americano via my Tassimo!! Brilliant
My Favourite- warmed milk with an Americano via my Tassimo!! Brilliant

In all honesty at first I didn’t really notice a drastic change at all. However, when I then bought a latte outside that’s when I really noticed the difference. I found that when I bought a latte outside my digestive system was not happy at all and would let me know about it within about 30 minutes!  Thankfully I only get moderate  symptoms on a regular basis although some days are MUCH worse than others, so  can imagine this milk making a huge difference to those who really cannot tolerate normal milk.

This is where you then look at the price of the product and say it is worth paying that little bit extra, and anyone who suffers digestive problems I’m sure will agree they would try anything to ease the symptoms.

So why not check out the 2 week challenge yourself?

The ALS Ice Bucket Challenge Rant….. For or against?

I will warn you now that this post will deteriorate into a rant and I cannot be held responsible for my language that may follow…………..

I have watched loads of these videos and laughed at the person being iced without ever having any intention of doing it myself. Then I watched a video that changed all that. This video is heartfelt and shows the reality and the fear that someone who cares for someone with this disease or has it themselves.

WATCH IT HERE

I have also been chatting to ‘friends’ on Whatsapp who over the last few days have shunned and slated people who are nominating them to take part. I warned them I had been nominated and would be doing it anyway ( I don’t bow under peer pressure!). However, in the conversation one lady put out a HUGE long list ( obviously copied from the net somewhere) giving other things I could do to ‘walk a mile in ALS shoes’………

* put weights on my ankles and take the stairs 2 at a time to feel what they feel going upstairs

* put weights on my wrists and try and lift a cuppa or feed myself

* lay in bed for an hour in one position without moving

* put marshmallows in my mouth and try and have a normal conversation and make myself understood

This got me riled to say the least so I ‘POLITELY’ put back….

‘ I may already qualify for those as I have M.E / Fibromyalgia meaning severe and chronic muscular skeletal pain ALL the time and have NOT been pain free for the last 4 yrs at least- NEVER in that time, EVER, even in bed. I use a walking stick daily due to severe exhaustion and ankle pain and a wheelchair for anything longer that a short walkabout. I have nausea and migraines regularly and I feel as though I carry a full extra persons weight on my back and bones and muscles all the time and my bedroom is up 2 flights of stairs- hope that helps! ‘

RUDE? No I didn’t think so but guess what…… I haven’t heard a peep back from that particular person! When I relayed this to my family and gave them the alternatives that she offered my youngest ( whose is 13yrs old) just said ‘ That sounds like you Mum’.

So I did my challenge knowing that iced water was definitely going to give me severe problems later in the day, however, my reasoning was that MND is degenerative to the point of taking your life, my illness is long term and chronic also but wont take my life unless I choose to make it so.

My #IceBucketChallenge for ALS/ MND

I know there was a bit too much vengeance in the throwing of that water. But what  I hope you notice is that I was rendered speechless, and the cold literally stopped me from doing anything apart from shake, which is the whole idea of the challenge. Just after that my OH had to help me up and by the time I had walked to my back door to go inside I had a searing pain in my left temple and a complete wave of nausea!

I was quite proud of myself though for doing it and my 2 boys have completed theirs today and my OH is doing his tomorrow ( revenge will be sweet!) and we are donating as a family with everyone contributing.

I felt good about myself that I had done something ‘good’ for charity, a great cause that most people know very little about and really is a horrible degenerative disease.

BUT……

Then tonight I saw a random comment on Twitter ( and I know and understand that everyone has their own opinion and I do respect that- hence I didn’t get into a Twitter row) that simply said ‘I am so over this #icebucketchallenge bollocks’. This one comment sent me completely off my fecking rocker. Bollocks? Bollocks? Really?

Ok I know this challenge is a bit like Marmite and you either are for it or against, but really raising awareness for a degenerative disease- Bollocks- I think NOT!

I would LOVE to know if that person has taken the time to visit the MND or ALS site. I would like to know if they have a person in their family who suffers with a chronic illness that is NEVER going to go away let alone take their life. I wonder if they would be of the same opinion if someone in their family or they themselves were diagnosed with ALS.

Answer me that………. would they be so fecking cold hearted if they had. This is what it is all about, raising awareness and funds to help with research into this disease and to help people who have to suffer this. I mean come on you wouldn’t see your family pet in that sort of distress let alone a member of your family.

So you can shove your ‘Bollocks attitude’ where the sun doesn’t shine, empathy and compassion costs nothing and it really wouldn’t hurt you to show some occasionally!

RANT OVER

To Donate just text ICED55 to 70070 to donate £5 to MND Association- it will take seconds for you to do this but could make all the difference to future sufferers.