Category Archives: Awareness

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