Monday, 17 August 2015

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.

Friday, 14 August 2015

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! 

Thursday, 13 August 2015

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.

Tuesday, 11 August 2015

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.



Tuesday, 4 August 2015

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!

Tuesday, 21 July 2015

Warrant officers and power companies

I don't know about you guys, but it's definitely unusual to be awakened by the sound of someone hammering on a door and yelling "Warrant Officer - Scottish Power. Open up!" repeatedly. No, not our front door, thank goodness. It was the flat downstairs, but because it has been so muggy at night we have kept windows open in the hope that some stray breeze will find it's way in.

Rather, I should say that we have kept the windows on the vent opening because I am afraid of giant eight-legged beasties finding their way in during the night and eating me alive. Since my husband is not keen on moths, I have tried to say that keeping the windows like that is for his benefit. He pointed out that, unlike me, he tends to hit his fear with a newspaper, which makes them go away - it also makes them flat, but that's besides the point (apparently). I scream and make him catch my fears in a glass; unless that particular fear happens to be a crane fly - a daddy long-legs - in which case, please flatten and dispose as appropriate. Just don't bring it by me. Yes, yes, of course I believe that you are all a) braver than me and b) kinder to things that scare the shit out of you...

Anyway, just at the point the warrant officer appeared to be considering making his own way into the flat, our neighbour finally opened up, or rather his adult son did. As our neighbour works around 60 hours a week at an American Diner he tells me he co-owns in Bilston, he had left home around 6 a.m. leaving his son to deal with the visitors. Once a warrant has been issued  - in this case for non-payment of fuel bill - then the officer assigned by the fuel companies has a right to enter the premises, under British legislation.

Because of the circumstances the engineers who had attended detached/removed the existing metres while the warrant officer looked on. A lot of questions were asked by our neighbour, quite sensibly, and prior to leaving the premises a new pre-paid metre was fitted. I must admit I did think that there was a small flaw in this system as my neighbour was told that he will need to phone a specific number to request a pre-payment card, which will be posted out. Once it arrives he then needs to insert it into the metre in order to 'marry' the two up. He can then start putting money on the card.

My first thought was that they were not going to have any light downstairs. My second thought was that the flat owner was not going to be happy at the pre-payment metre being installed, as the neighbours downstairs are tenants. I did then hear it explained that the metre had £20 already on it to tide them over until the card arrives.

Hearing all this downstairs did get me thinking; in order to reach this stage, the power company will have tried numerous contacts both via post and telephone. There will have also been a court hearing, that you will have been notified of and have a right to attend. The Citizens Advice Bureau (CAB) has current information on what to do if you find yourself in circumstances where you cannot pay your bill. The reality is that power supply companies do not want to cut off their customers. They would much rather an agreement was worked out for you to pay what you owe in affordable monthly amounts. One part of this could be that the power company insists that you have a pre-payment metre installed in order to prevent any future build up of debt. While this does mean that you will be able to keep on top of payments, as you probably know from various television reports, fees for power delivered through a pre-payment metre can be higher.

If you do find yourself in this situation and are struggling to deal with the power company yourself, please seek advice from the CAB or a similar service.

Saturday, 18 July 2015

A lovely way to treat disabled customers.

A few of you may have noticed that I am a little hot under the collar today. No, scratch that, I think fuming is probably a much more accurate description. Some of you are in groups that I have already put comments on, but for the rest of you, I will explain below:

Yesterday was weekly shopping day, including taking along my 85 year old mother in law. Because of budget we do not particularly want to drive the ten miles to her home, then nine miles back this way to a local market only to have to repeat the same journey again. We always used to shop at Wolverhampton market, but because of mobility issues we have not been able to do that of late. Instead we thought we would use the Lidl that is local to my mother in law; the Finchfield, Wolverhampton branch.

Not any more. Yesterday involved the usual parking in a disabled bay, popping the blue badge on the dash and heading into the store. Now you all know that I am not capable of so much as getting out of bed most days, but now and then - increasingly rare, I admit - I can manage to leave the flat for an hour or two. Come the time to exit the store and get back in the car and there was a ticket on the car saying that it was incorrectly parked in a disabled bay. On inspection, the blue badge was no longer on the dash, but now on the floor - still visible and still showing the correct side of the badge as it is in a holder. I am not entirely sure how that happened, I can only think that someone bumped into the car quite heavily and it slipped off the dash, where it started out. There are no marks on the car, so it wasn't another vehicle, it must have been a pedestrian.

My husband returned to the store and spoke with the assistant manager, Michael, whose reaction told him that this is not exactly the first incident they have had. He apologised, took a photocopy of both the ticket and the blue badge, then said that although he was unable to deal with it, the store manager would sort it out tomorrow (today in other words) and give us a telephone call. Well, yes, we did get a telephone call, but it was to say that he couldn't do anything and to call customer services. However he then said that if they couldn't sort it out to call him back. I must admit that did not make sense to me, because if he had already said he wasn't responsible and wouldn't/couldn't do anything, what would be the point in calling him back? He was also very reluctant to give his name and the store direct phone number.

I then telephoned customer services and spoke to Danny, who appeared very confused by the idea of fine tickets being issued on Lidl car-parks. He went away, a couple of times, and eventually came back to ask me to send them a photocopy of both my blue badge and the fine-ticket. After advising him that the assistant manager had already taken copies - and signed one for us confirming he had done so - Danny stated that they would contact the store and the matter would be investigated. He confirmed that I would hear something within ten working days.

It does not help that this same fine-issuer (£90!!!) turns tail whenever he receives a verbal response from an able-bodied driver who chooses to park outside the bays, blocking access etc. To me, that appears to be a case of picking on more vulnerable customers to make up the numbers.

I have been told that there is no legislation that forces me to pay this fine, as the incident took place on a private car park. I will research this myself to double-check it, but in the mean-time, I will not be paying a penny. I am more than happy to appear in a court though, in my wheelchair, or appear via Skype from bed if I am unable to move.

Had the store manager been just a little more enthusiastic and a little less reluctant to give even his name, I may not be quite so angry. As it is, I am fuming. I admit it. I am, however, also very concerned at the behaviour of the fine-warden on the car-park and would warn disabled drivers in particular to perhaps think twice about visiting Lidl, especially in Wolverhampton, Finchfield.