The death of Motley Crue

It has been an interesting week or two. When I returned to home after respite I was wiped out for a while; I spent almost all my time either sleeping or trying to find a position to either sit or lie in that didn't make me want to scream in pain. Then the pain decided to jump to another level altogether. Just to be really annoying, it jumped on the night I went to see Motley Crue and Alice Cooper at the Genting Arena, Birmingham.

Alice Cooper

Now, much as I love live music, my health issues make it very difficult for me to actually see any. Looking at my old tickets,  it appears that it has been four years since I last saw a live gig. Because I know that I am going to have after effects of a night out, I tend to make sure that it is a band that features in my top few. Alice Cooper has always been among my favourite musicians.




In fact, it was was a far better gig than the previous couple of times that I had seen him. Over the past twenty-five years I have seen Alice Cooper on numerous occasions, with a variety of musicians on stage and although he is always good this gig was one of the best I have been to.

Alice Cooper's band

I want to say that the staff at the Genting Arena are really well trained in dealing with customers with additional needs. The wheelchair section overlooks the standing area and, as you can see from the photos, has a great view of the stage. My photos were nowhere near as good as they were last time I went to a gig, but I had fun making memories of what was a fantastic night.

Nikki Sixx

 Motley Crue, on their last ever tour, were more amazing than ever. They have been fantastic every time I have seen them, but this time, wow. The energy in the arena was incredible and both Nikki Sixx (bass) and Vince Neil (vocals) seemed to be bouncing around like teenagers. Mick Mars (guitar) is not only a great guitarist, but a man that I admire for the way he deals with his own health issues. Having been diagnosed with ankylosing spondylitis as a teenager, an inflammatory form of arthritis, his spine has gradually seized and along with scoliosis, has further reduced his mobility. Despite the pain that he must have been in, he gave a great performance. As someone with health issues of my own, I know that our health does not define who we are and what we do with our lives, but it does affect our choices. For me, seeing someone with chronic pain performing in one of the most successful bands of their generation - and a generation or two after - is both fantastic and important. It reiterates that just because we have health conditions, we are still able to make the choices to live our lives our way.

Tommy Lee's drum-coaster

Tommy Lee and Vince Neil

There is never going to be a drum solo quite like Tommy Lee's drum-coaster. That was a seriously amazing spectacle; a drum solo where the drummer moves along a 'coaster and the drum platform spins upside down... I mean, I've seen some dramatic drum solos from Tommy Lee before, but this time it was something that is I cannot imagine anyone ever topping.




All in all, I really couldn't have imagined a better last gig from a band that has been around for such a large part of my life. It was emotional at the end of the gig; that final realisation that this was the last time that I would see a band who have always been so fantastic.

Is this the world's strangest motivation to exercise?

This is going to sound a little odd, so bare with me, I promise I will explain myself. As anyone who has known me for a while can testify, I am terrified of spiders. I don't mean that I shriek like a baby and squash the poor little arachnid, I mean I scream loud enough to wake the dead. Since I am fairly certain that none of us want zombies walking the earth, I would like to request that all spiders remain outside and do not enter my home.

Unfortunately at 4:00 am this morning, one particular spider decided that it did not want to stick with this restriction. My husband and I were sitting in the living room on the sofa, as lying down was - and is - causing quite a lot of pain around my rib cage. I glanced down at the floor, impersonated a boiling kettle and attempted to exit the room vertically, via the ceiling. It would appear that although me shoving the pouffe across the floor as I attempted to move my legs did cause the invader to pause momentarily, but it soon resumed the attack.

I promise that I am not exaggerating; it was the size of the palm of my hand. I am including the legs in that size estimation as, to me, they are the worst part of the spider. There is a strong possibility that the spiders do have a 'terrify her to death' contract out on me. There have been times in the past when it should not have been possible for any spider to confront me, but... Some eighteen years ago I was walking across a car park in West Bromwich with my mom after checking out a wedding dress shop - in the days before I got my wheels.The rain was torrential; I mean it was so strong that it was bouncing a good three inches off the floor when it hit. We were around a third of the way across the car park when something made me look down; a huge spider was sitting on the car park, in this terrible rain, giving me the evil eye. It is no exaggeration to say that I was both petrified and astounded to see this hairy-legged critter there.

Believe it or not, I am actually a lot better than I used to be. I once missed college because I couldn't get up the stairs to get showered or dressed, I have called friends round to dispose of them and once refused to sleep in my bedroom for several weeks because my dad had squashed a spider on the ceiling. To be fair that had left a spider-gut stain that I just couldn't cope with. I slept in one of the spare bedrooms until dad had disinfected and re-painted the ceiling. Yes, I am full-on phobic rather than a wee bit unnerved by them.

Yet there is something I am more afraid of than spiders; daddy long-legs (crane flies). Those things have lead to some far more dramatic room exits than the spiders. I once ran out of a meeting with senior managers at the DWP, back when I worked there, because a crane fly was dangly-legging its way round the room. Someone did eventually take pity and remove it, but not before everyone had laughed themselves silly.

Oddly this does have something to do with exercise and mobility. As you have probably guessed, it is a little difficult to scream like a siren and run out of the room when you can barely move. Add to that, I am certainly not sitting in my wheelchair all day, as my butt tends to go numb after a while. So, seeing that huge, monstrous beastie has given me motivation to carry on with my physio exercises in the hope that mobility will improve somewhat. 

I am continuing to be very careful about what I do and making sure that I don't go overboard with the physio. I will be honest and confess that I haven't yet started my yoga as I can't find the DVD. Yes, I know, bit of a lame excuse really as there are, no doubt, hundreds of low impact yoga videos on the internet. I do want to be careful though, hence the desire to stick with the DVD that JJ - the physio at my GP practice - recommended.

I hope that you are getting on with whatever challenges have cropped up in your life lately - and more than that - I hope that you are coping better with your fears than I am with my arachnophobia.

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.
.

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!

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. 

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.