Who’s Watching You?

Who’s Watching You?

Hi folks. I don’t know if anyone even reads this anymore, it’s been such a long time since I wrote anything on here. Serious health decline is my excuse, but that’s not the real reason. The real reason is somewhat more personal.

You see I started getting comments on blog posts. Personal ones. Talking about my life and saying I’m faking my illness. They even commented on how often we got take away delivered to my house! This continued to escalate. So called friends and family who never actually see me as they live at a distance started with similar diatribe. How I’m always moaning but theirs clearly little wrong with me. I need to try harder. Push further. Put up and shut up.

I felt like judgement and accusations were coming at me from all angles. That I couldn’t talk about any aspect of my life anymore. If I have a good day and do something, I’m a faker. If I have a bad day and talk about it, I’m an attention seeker. I couldn’t win.. everyone was forcing down my throat that I’m a loser.

This culminated in someone reporting me for benefits fraud. Why? Because I was taken to Florida with my family and my daughter went on a slide that apparently had 216 steps. (Ironically this was on one of the days I was in and out of sleep in the hotel. Crying about the fact that even with a scooter I couldn’t keep up with the rest of the family and I was letting the kids down. Upset that I was spoiling the holiday for everyone and believing I should have stayed home. I forget which of those days she went to that water park, there were a few where my body gave out on me.) They must have overheard her talking about it and assumed I went up them too seeing as the exact number of steps were reported.

I was completely truthful. I told the lady I had been to Florida. I hoped to save up over the years and go again, at my own pace rather than trying to keep up with everyone else. So my kids don’t see me left behind. So we can do all the things we missed. So they can actually get to see the fireworks. I told her about my scooter and the lifts to any ride I did manage to go on. How my neck issues are a new development and I haven’t even reported them as I would be entitled to higher carers and that would mean they’d use the opportunity to swap me to PIP. Stress I don’t need right now. With POTS and my other problems I’m allowed on rollercoasters!

I told her how I felt watched. How I have to try my best not to wear my collar and I’m judged if I leave the house without it. I told her that if I’m having a good day I will continue to go to the park with my kids. If I can manage it I’ll take my son down the slide. I’m going to grab every opportunity to do everything I can with my children when I can, because too much of my life is either in bed or in hospital. Do you know what she said?

She said ‘Good for you!’ She told me it was clearly a malicious report and they see it a lot when people have unseen disabilities. She told me I have to ‘stuff the lot of them’ and live my life as best as I can. If I want to save and go on holidays (Not that I actually can right now, but the hope is there) do it. If I want to go to the park. Do it. Live my life as best I can and don’t apologise for it.

So this is me saying a big fat F YOU to all the people who have tried to drag me down this year; the hardest year of my life. I will keep fighting for my health, I will keep resting when I need, I will also keep going out and enjoying precious moments with my family when I can. I’m not just disabled, I’m a mother, wife, lover, friend, woman.

I’m disabled, not dead and I have as much right to living my best life as any of you! I will not apologise. I will not explain. I will continue to paint a smile on my face whenever I can. Myself, my Doctors and my husband and kids know I’m no liar. That’s enough for me.

PS. Comments will be switched off on this page from now on due to people hiding behind anonymous comments on here to give me abuse. If you would like to comment on this piece please feel free to do so on Facebook where I shall be posting it on my page: This Little Life of Mine

The Gupta Programme… Cure or Cronk? 

The Gupta Programme… Cure or Cronk? 

I have been given this Gupta Programme trial as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

As you may be aware, since my blog has taken off I’ve decided to use my opportunity to trial some products that market themselves as being useful for the disabled community. This is because I often read reviews and wonder if they’re really true? Or if our community is just being used as an easy target audience for various companies. Knowing we are desperate for an improvement are they just taking our money with no real benefit? 

Recently I had the chance to trial The Gupta Programme. I partook in a three month programme which included live weekly seminars, DVD materials, workbooks and a gigantic infographic (the use of which would become clear on taking the course.) This particular course aims itself at people with Fibromyalgia, ME/CFS and Chemical Sensitivities. I cannot comment on if it helps with Chemical Sensitivities, but having a diagnosis of Fibromialgia and Chronic Fatigue, I can let you in on how it has (or has not) affected those. 

Firstly, a bit of the theory behind the course. Basically it is my understanding that Ashok believes research proves the Amygdala (a part of the brain) is the root cause of these illnesses. The theory goes that this part of the brain, which controls the bodies ‘fight or flight’ response is in a state of hyper arousal. The aim of the course is to re train this part of the brain, essentially calming it down and improving/curing these conditions. Apparently Ashok himself had CFS/ME and is now 100% cured! Something I’m sceptical of, but honestly I’m a sceptical kind of person! 

Image of the brain found on the Gupta Programme website.

Initially I was very sceptical of the course on a whole. It was only a state of complete desperation at my situation that lead me to join in with this trial at all really. In fact I even told Ashok about my reservations. He assured me it didn’t matter. As long as I followed the principles of the course I would still see improvements. I can’t deny, he did start to win me around as I fully took in the seminars. Things sounded much less crazy to me as many of the principals Ashok believes in are echoed by the several medical establishments I’m treated by here in the UK. He just takes them one step further and offers what I feel to be a ‘multidisciplinary’ approach. Where at hospital you would see a dietician, psychologist, pain managements team and sleep clinic all separately. This course addresses all those issues and more under one umbrella. Meaning, if nothing else, it’s definitely a very unified approach. 

Obviously I cannot go into too much detail about the course, it was three months long and included a whole range of information. But I can tell you that for me, it was the seminars that were the most useful part. Particularly when I was able to catch them live as it meant I could ask questions and give feedback. Seminars were at 6pm each week, the link being sent in advance. Though ideally you’d see them all live, you are able to watch at a later date. This can be to refresh, take notes or if you’re too tired to catch the original. Ashok is a huge promoter of pacing, so it’s important not to push yourself to join a seminar if you’ve already pushed yourself to the limit that day. 

Ashok articulating his point during a seminar.

The seminars were both interesting and enjoyable to watch. I certainly didn’t feel bored or zone out throughout any of them. He doesn’t advise taking notes during the original sessions as it’s important to listen and take in what’s being said. So sometimes it’s worth re watching if you think there’s things you want to note down. I even had a few lightbulb moments during the seminars. One being very early on in the course. I asked a question in which I referred to myself as ‘unable to be fixed’. Somewhere along the way I had lost the belief that I would ever get any better. Without that belief I had huge barriers up to improving my health. 

Along with the seminars was the workbooks and little homework tasks. It does sound overwhelming but on the whole it was doable. There’s nobody checking whether you’ve done these things, no qualification at the end. So no pressure. Basically you get out what you put in with this course. If you don’t bother following the principals then you’re not going to see any improvement. However if you give it a fair try, then who knows? 

Personally, I do think I’ve been helped by this course. Have I been cured? No. But I have other illnesses on top of those listed. So I would always have had those. Genuinely though, I do feel I’ve improved. I don’t know if my pain has reduced, or if I’m just coping better with it. But I do feel less burdened by the pain I’m in. Also, I have been managing to get out and about and do more. I took to heart the idea that an idle mind has more time to dwell on pain. So I have taken on some new challenges in my life. Things that I perhaps wouldn’t have done without this course. 

So, is it worth the money? Though it hasn’t been curative for me (at least not yet) I have found this course beneficial enough that I do feel it would be worth the investment. It does need to be understood that it’s not just a financial investment. As I said before, you really do get out what you put in with this Programme. If you’re not willing to work at it, then you won’t see the benefits. Also, it’s not a quick fix. You have to make life long changes. I myself started slipping back into old habits recently, and soon saw a decline in my progress. 

I’m glad I took this opportunity to trial The Gupta Programme. I’ve even recommended it to a few friends. Mentally and emotionally I feel it’s placed me on a much stronger footing to deal with any health trials I may have to deal with in the future. I’ve even recommended it to friends and family! Particularly as there’s a money back guarantee, so even if they don’t have the progress I have had they don’t lose anything. 

So while I cannot personally profess to being cured by this course, I can say it’s been of benefit to my life. I will continue to follow the principals in the future and am hopeful those benefits will continue for my future. 

Where’s my spoons?!

Where’s my spoons?!

Many people with disabilities which affect evergy levels have adopted the Spoon Theory as their mantra. Indeed when I first read it the words they struck a chord with me. So much so I posted them on social media and asked friends and family to take a look. I wanted them to better understand me. That may have been a mistake. You see, I’ve come to the conclusion that the Spoon Theory doesn’t fit my life. 

Firstly, for those not in the know I shall give a brief description. The Spoon Theory is a concept whereby energy is equated to spoons. Basically as a chronically ill person I would have a finite amount of spoons per day. Each activity I do would remove some spoons until eventually I had none left. The point of it is that we don’t have endless reserves of energy/spoons. 

This is very very true. In basic terms the Spoon Theory is an excellent way of describing life with a chronic condition. However I find I just can’t embrace it. 

One reason is on a given day I have no clue how many spoons I will have any given day. For me there is no set amount to wake up with. I cannot bank on having six or twelve or even one spoon. The theory states that going over your energy reserves on Monday, will take away from Tuesday. This is certainly true. But I can have a completely restfull day, and still have nothing in the tank for the next day. Until I open my eyes and take that first wakeful breath, I have no idea what kind of day it will be. Even then, I can never be sure. 


Often I wake in a morning and think ‘Yes! Today is a good day!’. Then, within hours, or even minutes, the tides have turned. Maybe my spoons are ninjas? Maybe the borrowers have been rifling through my stash? Whatever it is, I can go from having just enough energy to less than zero quicker than a scrambling fighter jet. Sometimes it’s due to a weather change, sometimes it’s stress. Often I have no clue whatsoever what’s happened. 

On top of this. The amount of energy activities take changes on a day to day basis. I cannot plan my day around how much energy things will take from me. Because I do not know. A shower may be doable on Monday. On Wednesday it may feel like bricks are pummelling me rather than water. My joints may feel stiff and rusty. Everything could take ten times more energy. I cannot count on being able to do tomorrow what I managed to day. 

Finally there’s another complicating factor. Pain. Let me tell you now, you can have all the energy in the world, but if you feel like someone just drove a dumper truck over you you’re not going anywhere! Pain entwines through my entire body in a daily basis. I never know how tightly it will grip. On a good day I can hide it. On a bad day it consumes me. 

So yes. The Spoon Theory is fantastic. But unfortunately it gave people the wrong idea. They thought if I rested I could then plan activities. If I worked my day so I didn’t have more than one thing on, then I could do that one thing. They had the impression that I had some vestige of control. I do not. I try. I try not to let my health rule me. But at best, I’m flying by the seat of my pants through an ever changing roller coaster of pain and fatigue. At worst I’m being pulverised by a Hulk type monster with PMT. Either way, it’s a whole lot more complicated than simply rationing my Spoons. 
PS The original Spoon Theory can be found here http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ 

Though I’ve come to realise it doesn’t fit me, it’s still worth a read!