I am the worlds worst when it comes to having a positive outlook on using my mobility aids.
It’s been a definite love/hate relationship for me. Even 12 years into my illness I still have that battle.
One of the main things for me personally is the fact my illness is completely invisible to anyone. There’s no plaster casts on my ‘broken joints’. There’s no bruising or swelling visible. I don’t walk with a limp or have a missing limb.
So, to anyone that meets me I look like anyone else. Until they clock that I use a walking stick.
So when I meet people, quite often for the first time, I will be greeted with the usual comment ‘ Oh what have you done?’. Meaning I must have hurt my leg in some spectacular fashion and that I’m now going to tell you the full hilarious story!
One of the biggest downfalls of having chronic illness is that no one is really interested in how you actually are. The phrase ‘I’m fine’ is incredibly overused. So, I wanted to share the chronic illness code for ‘I’m fine’ and a few others that we would say, but actually tell you what that means.
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 my hands and ankles. This is when when joints can dislocate and hyper extend easily.
I’ve had chronic illness and pain since 2009. 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 can’t remember of a time when I have been pain free in the last 8 years at least.. 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. Just let that sink in.
The most frustrating thing about my condition is that it’s completely INVISIBLE. There is nothing to see, no bruising, no swelling of joints in my case, no identifying marks on the skin. Yet my body is wracked with pain daily. It also varies day by day which doesn’t help at all. In my case it’s generally at it’s worst in the winter.
I’ve also written about ways I can use heat to help with pain levels and trying to stay warm here as it’s just not possible to have your heating on 24hrs a day!
So, I wanted to share the chronic illness code for ‘I’m fine’ and some others but actually explain what we mean, to help you gauge how we feel on a particular day.
Any of you that have been following me for a while will know that I have ME and Fibromyalgia, which in layman’s terms means I am permanently exhausted and have constant chronic pain. There are 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. 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.
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.
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.
This is what we have been going through recently, my teen gets an ASD diagnosis at 17. My eldest has always shown Asperger traits throughout his growing up, but appeared very high functioning. It has never been a major issue to him or us as parents to major degree but now looking back we both feel a lot more makes sense.
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 skills 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 alongside the school to help him with organisation.
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. We were totally unaware about it as he hid it very well under a laid back exterior. But this led to a period of very low mood. This happened when he as a 16 years old. Encouraged by one of his friends he then made an appointment with his GP and went off to discuss his possible ‘depression’ before telling us that he had gone. He informed us that 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. Therefore, this can lead to the high anxiety resulting in a secondary ‘depression’.
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 have certainly noticed this recently as I have a son who turned 16 in April. A trend seems to have appeared where the parents throw their little 16yr old cherubs a party at home, complete with alcohol. So when did 16 become the new 18?
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 paint balling. 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 excessively 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. I would scuttle up 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. I was certainly never brave enough to ever get blatantly drunk at that age either. 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!
First of all don’t get me wrong I enjoy CHRISTMAS!
I really do, my decorations go up at the start of December. The teens still get their own filled advent calendar and we watch all the Christmas films going. 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 are we inundated with bloody Christmas adverts already. OK, I’m also guilty of getting sorted for the season early. I’ve got my cards, and I am making my lists for pressies and have already started buying all my festive chocs and treats. I know some shops even have had their Christmas stuff in and on sale even before Halloween. I’m not daft 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.
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.
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.