Does anyone else get competitive with themselves?

A serious question; does anyone else get competitive with themselves? I mean stupidly so, to the point where you actually put yourself into a negative situation in some way. I do. I am honest enough to admit that. I do get competitive with other people, although I don't tell them, but it is when I get competitive with myself that I end up getting in trouble. What can I say? I am my father's daughter and I have his competitive nature.

Me and my dad

That was okay, to a degree, when I was healthy. I used to enjoy weight-training and bought myself a multi-gym when I was 16; it was great fun and I really enjoyed the competitiveness. The fact that I could see progress in the amount of weight I was using and the number of sets, as well as definition. Yes, I know, looking at me now it's hard to believe, but I did have pretty good biceps, triceps, quads and calves in particular. Leg work was always my favourite.

So when I had a Wii back in 2007, coinciding with an improvement in my health conditions, I did the same as I always had. I got competitive with myself. The game records all your stats so you know how much you are doing each day and whether you have improved. I started off quite sensibly doing five minutes of yoga a day. Now that may not sound a lot to a healthy person, but believe me when you have health conditions with pain and fatigue as two of the main symptoms, it is an awful lot.

The best I had been for over three years; I managed a boat ride and sitting on the beach.

My competitive problem reared its head a couple of weeks down the line, when I started to increase the amount I was doing. Now that is something that pacing suggests, that you gradually increase the amount you are doing. The key word in that sentence is 'gradually'. I got carried away. At one point I was up to an hour a day yoga and cardio. I didn't go beyond that, but even though that was spread out through the day in five or ten minute sessions, it was far, far too much for someone whose fibromyalgia and M.E. are as severe as mine. 

The result was that I crashed. I ended up being stuck in bed not for days, or weeks, but for months, with only brief periods of being able to get out of bed. This was particularly frustrating because I had started studying with the Open University again in February 2007. Even with that, despite taking the exam at home, I attempted to type it. I almost passed out while I was doing the final essay because I was in so much pain. The sweat was  pouring off me and my invigilator was all for calling a doctor out. I called time on the final essay, leaving it part done - another frustration - and that was the point when I crashed.

My graduation in November 2013

I can't even say that I learned my lesson, because I didn't. I started volunteering as a tutor with the Expert Patient Programme course in 2008. Rather than doing the requested two courses a year, I did back to back courses. Okay, yes, it is only two and a half hours a week. But for me, that was (and is) a lot. By the time I finished the session I was in so much pain and so fatigued that I would spend the following six days stuck in bed before I got up and repeated my mistakes. I volunteered for every training course, award event and promotion event that I could. You would I would learn at some point, but no, I didn't.
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The Mayor of Dudley, with myself & Ann Tee, there as representatives of the EPP volunteer tutors

The reason I am telling you all this is because by being honest I am hoping that I can learn from my past mistakes and begin to gradually improve. I am not expecting miracles, I am simply going to take baby-steps and be thankful for any small improvement that I may have. I have spent most of the last year in bed and my hope is to improve enough so that I will be able to to out of bed every day. That is my first goal and I am not going to get too competitive with myself. If anyone suspects that I am getting too competitive, please feel free to tell me off!

A seriously sweet win!

Comping is a wonderful hobby; like any other hobby there are times when it is more fun and times when you just get bored and maybe stop doing it for a few weeks. I had a couple of weeks last month where I didn't enter any competitions at all and a couple more weeks where I entered a few here and there.

I often think that it doesn't matter whether the win is large or small, it can be just as exciting to receive that winning email (known as WEM in the comping world), social media message or good old-fashioned letter. Today I have received two prizes that I won a week or two back, the first bought a smile to my face when I opened it:

I won these courtesy of New Magazine and Maoam via New Magazine's twitter page. Have to say that the bag was opened for testing purposes *cough* not long after the had been unpacked.

The other prize I received today was strip spot-lights, which are going in the hallway to brighten it up as we don't have windows there. I will take a photograph of them once they are up so that I can properly thank the sponsors. I do think it is important to thank companies for running competitions. Although we all know that they run competitions for the express purpose of promoting their products, they don't have to promote them in this particular way; I think that thanking them for doing so is a great way to let them know that we appreciate it and that it is working as a way to get new people looking at their products.

Mobility, exercise and pacing.

I have been thinking about what type of exercise is best for me given my mobility issues. So far I have narrowed the list down to Yoga and Tai Chi. Both would be difficult and some movements would be well beyond my ability, but I think that both would be beneficial. I've popped in a link to the NHS website about these forms of exercise. You know as well as I do that there are a million and one websites out there and different websites will suit different people

Past experience has taught me that I have a tendency to not listen to my body and try to do too much. I compete with myself and push myself to the point where my health ends up suffering. What I want to do this time is to try a little common sense and get my husband involved as I guarantee that he will stop me going too far.

As, more often than not, I am too ill to manage to get out of bed, let alone the flat, I am going to have to make some adjustments. I think the best way of doing this is going to be by using pacing. Most of my friends who are living with chronic health conditions will know at least a little about pacing. For those who don't, this is how it was explained to me:

• Open up a spreadsheet (or paper record) for each 'activity' that you do, such as walking, standing, sitting, lying down, showering etc. 
• Aim to keep records for at least a week, longer if possible. Make sure that you have included both your best and your worst days; this is important in establishing a true & correct baseline. You should record how long you can do each activity for, making sure that you stop before it becomes uncomfortable. 
• Once you have your record, you should add each individual task's times up then divide by the number of times you performed that task in order to get an average. 
• When you have the average, you will need to halve that figure. That is your guideline. 

Once you have the average, you've got your guideline. That is what you should aim to stick to, at least for the first week. The point of pacing is to try and help you manage a long-term condition and to improve your current abilities. Once you have your guidelines and tested them out to make sure that they work even on your worst days, then you can start to build them up. It is up to you how you choose to do that, whether it's a minute at a time or ten minutes. What I would say is don't try to build up too quickly and make sure that you include rest and relaxation into your day. That's something I have done in the past and regretted it.

This is a really basic description and before you try pacing, I would suggest talking to your medical practitioner team, whether that is your GP, your consultant or your physio. Pacing really can make a positive difference if you do it correctly. From my point of view the most important thing is making sure you include sufficient rest and relaxation. The reason I think it is particularly important is because I have failed to do that on more than one occasion and ended up making myself worse than when I started. That is a very real risk with M.E. as well as fibromyalgia, Lupus, CRPS and a number of other chronic health conditions.

So my first task over the next fortnight is to establish my baselines and find a decent Yoga or Tai Chi game for the Wii or XBox or a DVD. In the past my baselines have been as low as a minute. It doesn't matter where I start out, it's the fact that I do that counts. 

Weather plus a cold equals fibro hell and a postponed trip

I was supposed to have travelled to Wales last week for a fortnight's respite. Unfortunately my immune system decided against that and instead decided that a cold would be a really fun thing to have. I would rather have had my trip to Wales. Still, I do believe that things happen for a reason and in this case perhaps the reason was that it has barely stopped raining all week, according to my mom, who has been about 15 miles away from where I go, since Wednesday.

Because I wasn't in Wales I could, in theory, have gone to Weight Watchers on Wednesday instead. I say 'in theory' because what happened was that I slept all day. As you may already know, one of the primary symptoms of fibromyalgia is fatigue. The cold has made things worse; I haven't had the strength or energy to wash my hair, meaning it feels disgusting. Greasy hair is my pet hate, so the very first thing I am going to do the moment I have enough energy is to wash my hair.

My hair, currently blue, is one of my 'things'. We all have things that we insist has to be okay before we leave the house and for me, it is my hair. That tells you straight away that I haven't been out of the flat all week. The main reason for this (apart from my hair!) is that I don't have the energy to get down the stairs let alone back up them.

However, as I've said before, just because I have struggled to get out of bed, even with assistance, it doesn't mean that I can't do movement of some description. This week, movement has consisted of very gently using my resistance band to help raise each leg off the bed in repetitions of five. I am then repeating that later in the day. I am using a combination of thigh, stomach and arm muscles to do that. Believe me that while I am aware that doesn't sound like a lot - and for most people it wouldn't me - but for me, it is. Energy-wise even just that amount of movement feels as though someone has stuck a needle in me and sucked all the energy out. My muscles are drained like flat batteries!

So, that is as much as I have been up to this week, apart from entering competitions on the internet which, unfortunately for me, doesn't count as exercise. I hope that it has been a better week for you this week, despite the weather.

Health and hope of improvement

I know that this often sounds a little strange to people, but I promise you I am telling the truth; my health improves quite a lot when I am particular environments. At home my various medical conditions mean that I spend a great deal of the time in pain or experiencing extreme fatigue. I also have sensitivities that mean bright light, loud noises, repetitive noises and noises of particular pitches, certain scents or chemicals result in physical pain. The scents and chemicals part also mean that my skin starts of with a burning sensation, then goes red and will either blister or swell.

I go away to Wales, where I am out in the countryside and away from many of those triggers and I find that far from being forced to spend 80% of my time bed-bound, which is what happens at home, I can be in the living room looking out over the fields. There is a very good chance that I will be able to sit outside, still with dark glasses on, but I won't end up having to spend the next week recuperating just for sitting outside. I may even be able to go to the beach; several of the beaches in Pembrokshire have beach-wheelchairs, which have enormous tyres so that they don't sink in the sand.

One thing that I know I thought when I first became ill was that I didn't realise just how difficult things are for people with disabilities in this country. A lot of businesses just don't think about accessibility because the person in charge often doesn't have a disability themselves, or immediate relatives with disabilities. Current legislation does require them to ensure that their business is accessible to ever member of the public, if indeed it is a business that deals with the public. Reasonable adjustment is what it is known as in the legislation.

Now obviously a 12th century castle isn't going to have lifts inside and it would be difficult to do so; asking them to do so would not be a reasonable adjustment. The shops down in Kingswinford with large steps up into the shop should all, however, have a portable ramp so that wheelchair users can access the shop. The only place I have seen that has gone one step further and altered the entrance so that there is a built-in ramp is the Tenovus charity shop.

Pembrokeshire, which is where I go for my particular brand of respite, has worked hard over the past few years to ensure that all parts of the county are accessible to everyone. Even the coastal path, which is around 185 miles in total, has been made as accessible as possible. Not that I can self-propel anyway, but it is nice to hear that one county is taking its responsibilities to all of its residents and visitors seriously.

The rewards of comping

It's funny how even the smallest prize can bring a smile to your face when you win. This week has felt really stressful, purely because some small things have cropped up. However this week I have had four winning notifications. The largest of these was an email from litecraft today to let me know I had won their 'Great British Bake-off' inspired competition. The prize was any one of four lights that I got to choose.

I also had a notification from La Redoute that I had won an Abrams and Chronicle book, plus a message from New! Magazine that I have won a packet of Maoam Rhubarb pinballs. Those will be heading straight for my stomach once they arrive. But that doesn't cover all of my wins for this week; I have also won a couple of books and keyrings that I am looking forward to receiving.

Comping is an excellent hobby and can be great fun. There an awful lot of very friendly people out there who are willing to help people new to the hobby understand what they need to do to enter and how to avoid the pitfalls. One of the biggest things has to be people not reading instructions properly and so they end up not entering the competition. That, of course, means that they never win. Since that works the same in exams - people not reading the question properly and so not achieving high grades - I'm just going to go with thinking that it gives me a better chance of winning! 

Mobility issues, exercise and weight

I was finally well enough to return to Weight Watchers last night at the Our Lady of Lourdes Catholic Church in Kingswinford. The meeting I go to is run by a lovely lady who understands the problems I face as a wheelchair user whose medical conditions result in extreme levels of fatigue and high levels of medication. Jane has given me some really useful suggestions over time and although she works for Weight Watchers, her focus has never solely been about losing weight. She has, for as long as I've been going there (quite a while), also focused on health, the benefits of eating healthily and exercising.

A few months back I switched medication and this has had the effect of making me feel even more fatigued than usual. By fatigue I don't mean tired; fatigue is something different and far more extreme than being tired is. For me fatigue is present in my muscles, making it difficult at times to so much as raise my arms a few inches. This often feels very similar to lactic acid, sort of burning and as though someone has sucked all the energy out. In addition, I get very mentally fatigued and can't think; this presents as the well-known by fibromites, brain-fog. You'll be lucky to get a word you recognise out of me at times!

Still, that doesn't mean that I can't eat healthily and do a little exercise, in my own way. Or does it? Well, yes and no. There are times when I struggle to swallow most types of food. At these times I can only manage small amounts of either soup or very soft foods, such as mashed potato. Although I often feel nauseous at these times, I rarely vomit. That does mean that at times I struggle to eat the right nutrients; given that I have fibromyalgia it is particularly important that I get those nutrients.

The lack of mobility, which includes that I am often bed-bound, does mean that exercise is difficult. It doesn't mean that it is impossible. Exercise takes all forms and can be tailored to suit just about everyone. For my brother, a bike-ride could be his exercise, for my husband - before he was injured - a long-distance training run, a couple of hundred sit-ups and the same in press-ups was not unheard of. In my case, there are days when - from my position lying down - raising my hands a few inches off the bed and repeating this a set number of times may be all I can manage for that day. Still, it is movement and movement is something that we should all be aiming for. I know that some people with mobility issues find that their caregiver worries about them exercising, so I would like to include a link to this article, as I think it makes some very good and useful points.

Of course, the lack of mobility does mean that I am perhaps more prone to weight gain than I was back in my able-bodied days. I can't deny that recently tic-tacs have formed a big part of my diet (appalling, I know); this has been because my medication leads to excessively dry-mouth and sucking a small sweet helps to relieve that. I do need to find an alternative that isn't quite so full of refined sugars. Eating the right foods is becoming more and more important as my health continues to deteriorate and I get older. I'm into my 40s now and I don't want to continue gaining weight. I want to be heading in the opposite direction and aiming for a healthier weight. Let's face it, if my backside gets much bigger I'm going to get wedged in my wheelchair!

At the moment one of my big inspirations is someone I grew up, who I knew from the age of two. She has lost four and a half stone, and is looking amazing. I am not going to put any pictures of her up, as I don't have her permission, but I am sending her the link to this to let her know that I am so proud of her and that she has inspired me. I wish her luck on the rest of her journey and will hopefully see her at Motley Crue's gig in Birmingham later this year.

Dead Rising: Watchtower, movie review.

I have been doing online competitions since the beginning of the year and it is proving to be an entertaining hobby. I have won quite a variety of things, ranging from DVD's to vouchers for a holiday cottage. The latest prize to drop onto the doormat (also a prize) was a DVD of 'Dead Rising: Watchtower'. I'm going to give you early warning that I am about to discuss the contents of the film and the storyline.

Based on the video game series this movie was far more entertaining than I was expecting it to be. Set some ten years after the initial outbreak survivors of zombie bites receive a medicine called 'zombrex' which keeps them from changing into one of the living dead with a taste for human flesh. When a zombie outbreak occurs, a twelve-mile wall is erected around the town to prevent the spread. Healthy people are directed to a particular location within the town, where the large number of bite survivors from previous outbreaks are given their preventative medication.

The sarcastic journalist hero from the earlier games, Frank West, makes an appearance in this film as an expert guest on a news show that is covering the outbreak. He manages to frustrate and anger the news-reporter within moments of first opening his mouth, as he insists that the residents trapped within the walls are all going to die. 

Inside the walls journalist duo of camera woman Jordan and reporter Chase are after a scoop that will make them famous, or at least Chase is. The duo become separated as the preventative medication fails to work and those who should be safe, have a sudden desire for human flesh. Jordan makes it out, Chase is trapped inside with two women who seem to have a far better grasp of the realities of zombie fighting than the reporter does.

Between zombies, bike gangs, a government willing to deploy the most extreme of tactics in order to contain the zombie outbreak and - worst of all from my point of view - a clown zombie (argh!) Chase, Crystal and Maggie have a hard task just trying to stay alive, let alone making it out of the town. Meanwhile, Jordan is having her adventures as she tries to prove that she is not infected, after witnessing FEZA and the police shooting those fleeing the zombies as they approached the gate to freedom. Just who is the bad guy and will she make it out alive? Good questions and not something I am going to answer. Instead I will leave you to watch the film and find out for yourselves.

What I particularly like about this movie is that the zombies act like zombies, not some warped CGI version crawling along the ceiling. The action moves along at a good pace with plenty of dark humour included; at times you don't quite know whether to laugh or cringe and this combination works well. It isn't an all-out rom-com-zom movie like Shaun of the Dead, as Simon Pegg put it, but it is still entertaining.

If, like me, you enjoy a good zombie movie, then this one is worth a watch. It isn't the best zombie movie you are going to come across - for me Romero remains the best - but it is a decent film with interesting characters and a pretty good plot line. I would definitely recommend it.

Back, medicated and choosing to smile

First thing: I'm sorry about vanishing again. I want to explain why, but I don't want to sound as though I an whining. I promise you that I am not.

My health decided that it was about time I was reminded just how bad the pain was when I first became ill. I actually have several chronic pain conditions, one or two of which flare up every now and again but usually stay around mid-range. My worst condition(s), fibromyalgia and pain amplification syndrome, hover high up on the pain chart. All conditions decided to hit me at once with their worst efforts. I am very grateful that I have much better medication now than I did eleven years ago when the fibromyalgia decided to first make its presence felt. It was the worst pain I have felt for a long time, it did hit that 10 on my personal pain-scale. I am still embarrassed that I cried over it.

I will say that I am also very embarrassed about having to phone up my husband and ask him to come home to give me a pain relief injection while he was visiting his mom and taking her food shopping. It is also something that I am very grateful he asked to be taught how to give the injections, as the very busy emergency G.P. service takes several hours before a doctor attends. That is several hours where I am in agony and my husband gets to witness me in agony. Not pleasant for either of us. I swear like a navvy at the best of times, you really don't want to hear my language when I am in that much pain!

During the several hours it takes to get an out-of-hours doctor to visit we first have to telephone to request the visit; at that point the caller is questioned about why we need the service. They almost always ask to speak to me; not an easy task as I have some speech problems and I'm usually struggling not to scream with pain at that point. The calls and questions usually take place over one to two hours, sometimes longer. After the initial call from us, we then receive a call back from a nurse, who asks the same questions again. Finally we receive a call from the doctor who not only asks the same questions for a third time, but also told me - the last time I used the service - that I had called too often (two to three times a year) and they would no longer attend. He told me that I would have to go to the hospital in future.

While I appreciate that they are extremely busy and it must be frustrating for them that they had to attend my home more than once a year, I am bed-bound a great deal of the time. If I wasn't then I would have attended the walk-in out of hours clinic located near to/at the hospital and wouldn't have telephoned them in the first place. If I cannot stand up, then it is pretty much impossible for me to get out of bed, get dressed, walk down the stairs, to the car and so on. I felt very stuck and very angry when they first told me this. I was especially angry that the doctor who attended was not well versed in giving injections. This was something I discussed with the NHS and several doctors and nurses that I know and I am aware of the reason behind a number of out-of-hours doctors being poor at giving injections. It is also one of the reasons that I am very grateful that my husband was taught how to give IM injections.

It is frustrating for medical professionals not to be able to cure their patients. It is a damn site more frustrating to be the patient that cannot be cured. How you handle things though, is your choice. Our emotions are affected by body chemistry, circumstance, our life and life-style, but I strongly believe that there is an element of choice in there. I choose not to be a miserable, moaning and angry individual over my health. What would be the point? The person I am most going to upset if I react and behave like that is me. I can think of no good reason why I would want to make myself miserable and angry. We all have bad days, and we are allowed to. Forgive yourself for those bad days and keep moving forward with a  smile. One day we are all going to be able to kick our health issues - or other life issues - up the arse and throw them in the bin. I'm looking forward to that day and saving an evil cackle followed by a big smile for the occasion!