Category Archives: Health

My health, our health, your health

Diabetes

I was diagnosed with type 2 diabetes in 2005.  In the 12 years since we found the right level of medication, the metformin dose I’m on has never changed.  Until today.  Up from 1500mg a day to 2000mg a day, with a promise from me to the GP to also lose some weight with my intent being to reduce that dose again.

Ever since the accident last year, and to be fair, for a short while before it, my sugar has been creeping up and my HbA1c’s getting worse.  I’ve had a couple of ‘soft’ attempts at getting it back under control, but not enough to offset the changes, and so it’s time for a bit of focus.  I don’t want the change to be permanent, I want to be able to reverse it, and I’m going to try hard and delay the ‘inevitable’ slide towards insulin for as long as possible.

It remains to be seen whether my will power will be strong enough to actually lose weight, but I’m going to give it a shot.

I’m pleased the GP was once again willing to work with me, rather than simply sticking me on a new medication or insisting the change was larger and permanent.

Interesting, the only reason I know it was 2005 when I was diagnosed, is because I read back and found the blog posts where I started talking about it, which is a sign I guess that I should blog more often, not because anyone reads them, but just because writing this stuff down is useful for my own memory.

How come it’s only Wednesday?

Feels like it should be at least half way through Thursday by now, if not next Tuesday.  We finally got Greté’s ESA submission completed and sent off.  It arrived on the 8th December, just in time for Christmas.  So thoughtful of them.  As usual, the mere existence of the form made a big dent in Greté’s confidence and overall management of her depression.  Being asked to describe how bad your illness is so that someone else can judge whether it’s bad enough to deserve welfare isn’t exactly the most confidence building of actions.  Doing so when you’ve had to appeal and subsequently win twice previously just makes it all the harder.

I’m still not convinced the financial cost of processing the ESA submissions and subsequent appeals outweighs the financial cost of just paying anyone who applies for it in the first place (never mind the health cost to those affected).  There’s a flat percentage of people who’ll take the piss, and they don’t mind lying on the forms.  Most honest people who aren’t trying to deceive anyone are honest on the forms anyway, and still get rejected until the appeal stage.  I don’t see how anyone wins at this process.

Anyway, we’ve filled in the forms, honestly, and we’ve included the letter we sent in for the 2013 appeal, and we’ll see what that results in.  We’ll keep trying to manage the impact on Greté’s health and hopefully get her back to a more stable position.

Depression Awareness Week – 2015

This is the letter I wrote, but never sent to my MP. I never sent it because writing it took so much energy, that I couldn’t face going back and proof reading it, and by the time I was ready to do that, we’d completed the appeal and Greté had been moved to the Support Group. So apologies in advance for bad grammar, repetition and typos.

I wrote the letter the day we got back from the interview at the DWP, which is a mandatory aspect of being in the ESA Work-Related Activity Group.

“I appreciate this is a long letter, but it is written from the heart, and I implore you to read it.

Myself and my wife (Greté Evans) have just returned from a mandatory interview with an employee at the Job Centre. Firstly, I want to say that I have the utmost respect for the staff working there, and that despite the rest of this letter I have no complaints about how any individual has dealt with our case.

My wife suffers from a condition which used to be called Dysthymia, but is sometimes known as Persistent Depressive Disorder. The Wikipedia link for the condition is,

http://en.wikipedia.org/wiki/Dysthymia

My wife also suffers from a Panic Disorder, Agoraphobia and a number of related conditions. Additionally, she has chronic back pain due to an issue with her spine.

In the mid to late 90’s, while undiagnosed but still suffering from dysthymia, my wife continued to try and work. Sometimes those were paid roles, sometimes they were voluntary. However, around 1997 my wife’s health deteriorated and she was laid off from her last paid job. Although she was diagnosed (again) as being depressed, and given anti-depressants, the diagnosis was not for dysthymia and the anti-depressants in question were unsuitable.

After a number of months, Greté tried again to get work, with a temp agency, but during her first day suffered a severe panic attack and had to leave the office to which she had been sent. This crushed the last of her remaining self-confidence and over the next year or so, her health suffered even more greatly. Over the following 2 years there were periods in which she considered suicide as her only source of relief.

Over subsequent years, Greté had severe bouts of depression on and off, over the top of the constant dysthymia. Eventually, she met a GP who understood her condition and together they finally found a diagnosis for Greté (tragically, the GP was Dr Elizabeth Kinston). With the right medication and support, Greté has been able to manage her symptoms for a number of years now.

But she is not cured. Every day she battles depression, every day she battles panic attacks and crushingly low self-esteem. Some days Greté is able to go out to places she knows well, with people she trusts, and those people might think she’s perfectly healthy. Greté can go shopping to Tesco, but if something out of the ordinary happens, or the aisles are busier than she was expecting, she might well suffer a panic attack and have to leave. Other days she battles to even get out of bed.

During all of this, Greté has received various benefits, and until recently was receiving the non-means tested benefit introduced before ESA. During those periods we have both suffered the shame and dehumanising health assessments, carried out over the years by decreasingly qualified medical staff. In 2006 we appealed when Greté was told she was fit to work. Within minutes of the appeal board interviewing Greté, it was clear to them the decision had been made in error and her benefit was re-instated and back-paid.

Earlier this year, Greté was informed she would be moving to the new benefit system, and would need an assessment. We received the forms and completed them honestly, as best as we could. Within a few weeks Greté was notified she was being categorised and placed in the Work-related activity group. We were told we had 30 days to appeal.

But we didn’t know what to expect. Greté doesn’t want to spend her life not working. She already suffers from severe self-esteem issues and not being in work in the current climate and current ‘scrounger mentality’ government stance makes those feelings ever more acute. We both hoped that maybe the process would offer up some help, some assistance. Greté could speak to people who understood her condition and together they could work through the options and perhaps begin the process of understanding how, if possible, Greté would be able to get back to work.

This is all against a backdrop of my deepest fear. Greté’s condition means that she can’t handle change, confrontation, unexpected situations or some social interaction without severe panic. A panic attack at work so severe you can’t breathe (let’s not even talk about getting through a job interview), and leads to you running out of the building will only lead to a tough conversation the next day. So maybe Greté has a panic attack and a few days of severe depression and then goes back to work. Maybe it happens again a few weeks after, and another conversation with her manager results. But Greté’s illness prevents her from handling that as well, and she’s signed off for 2 more weeks. Combined together, this causes Greté’s ever present real illness to worsen, her self-esteem to crash and her anxiety to take over her whole day, and suddenly she’s considering suicide again as the only option.

Despite that fear, we didn’t appeal immediately, we waited and we went to the first interview with the DWP. Of course, Greté couldn’t go on her own, but I went with her and we listened to the member of staff tell us what this process entailed.

Her first comment was that most people miss the bit in the letter that says benefit is only paid for 365 days before becoming means tested. Indeed, we had both missed that. Greté immediately suffered a panic attack, began crying uncontrollably and would have left the building had I not been there to basically physically hold onto her. I got her calmed down, and we listened to the rest. Basically, there is no support, there is no officer who understands Greté’s mental illness. There is someone who can help you find work, but finding work isn’t the problem.
The issue is Greté being physically capable of attending an interview and holding down a job with her current illness without eventually becoming suicidal.

Even if we don’t engage with the process, and just go by the numbers, in a year my wife’s benefit will stop. I work full time, and earn a salary. I’m sure we’ll still be able to eat, but that’s not the problem. My wife’s illness leaves her with no self-esteem. She already considers herself, during the worst of her days, a burden on me, and those around her. The fact that she currently has her own money with which she can contribute to bills, gives her some sense of worth. When that last thing is taken from her, when she feels as worthless as she can, it will be the final act of a government that doesn’t care about her.

So today, while my wife recovers from her ordeal and tries not to slip into a further depression which may last weeks, I am going to start the process of appealing the initial assessment.

We tried to engage this process constructively, we wanted and hoped that we might get some help, and that Greté might get some support to work despite the significant challenges she faces. But it is clear to me that the process itself is not constructive, that actually it doesn’t care about the effect working for a living might have on someone’s health, it cares only about getting that person off benefit and into a job. Should they fall sick again afterwards, or indeed, God forbid, should they become so sick they commit suicide, the process doesn’t care and for a short time at least the person is off benefit and killing themselves slowly in a day job.

I will not allow anyone to make my wife more ill. No matter how healthy she appears day to day, the very act of working for a living could put her life at risk, and I won’t allow it to happen. Ironically, if she were in work right now, she’d be signed off sick due to the anxiety and additional depression the recent few weeks and months have brought on.

You may feel I am being melodramatic. I have no idea how much you know about mental illness, depression, anxiety or any of the other issues that myself and my wife live with on a day to day basis, but I promise you, there is no exaggeration here, no drama for the sake of it.
Just an amazing wife who suffers from a terrible, invisible illness.

I do not know what I expect you to do with this letter, I guess I just mostly want you to know how current policy is affecting real people.

Thanks for taking the time to read this.”

Depression Awareness Week – 2015

My wife suffers from Persistent Depressive Disorder (Dysthymia) and does not work.  We appealed a decision to move her into the ESA Work-Related Activity Group in 2013, and that appeal was successful.  This is the e-mail Greté wrote, and rather than writing some long blog posts about Greté’s illness, I’m posting this to give you an idea of what she battles with daily.  Tomorrow, I’ll post a letter I wrote (but then never sent) to my local MP.  I’ll explain why I never sent it in that post.

Again for clarity, this letter is from and about Greté.

Dear Sir / Madam,

On the 6th November 2013 I (Greté) was placed into the ESA Work-Related Activity Group. I am writing to you, to formally ask you to look at the decision again.

I do not believe enough consideration has been given to my mental health and how both looking for work and then trying to hold down a job will affect me.

I tried to answer the questions in the questionnaire honestly, but feel they have not been reviewed fully in context. For example, I would not be able to attend job interviews on my own, and would be unlikely to be able to attend my first day at any new job on my own either. Which prospective employer is prepared to let me attend my first day at work with my husband or someone else I trust so that I don’t have a panic attack? Which employer would let me attend with someone for the first 2 or 3 months until I built up enough confidence and trust in the place of work and the people present so that I could go on my own? Who could even spare the time to attend with me in that situation? That is the reality of my mental health. Can I go to the local Tesco on my own? Yes, because I have been there literally hundreds of times before with my husband. Could I go to a shop I have never been in before? No, and if I were made to it is likely I would suffer a panic attack before I even made it in through the door.

My conditions (dysthymia, panic disorder, agoraphobia) are not cured. I am not well. I suffer from those conditions every day. At best, I manage my surroundings to try and contain the symptoms and ensure I don’t dip into a double depression. I thought that the work-related activity group would include support and counselling to enable me to begin to move towards the process of looking for work. However, in discussion with the Job Centre Plus staff (I attended the interview with my husband) it is clear that level of support does not exist. At best, the process would help me looking for work, but looking for work is not and has never been the issue. As it happens, I had a panic attack during that interview, despite the presence of my husband, and only his presence stopped me leaving the building. Instead, I just sat and cried uncontrollably throughout the whole interview.

The issue with the mental illness that I suffer with daily is that I can not deal with change, stress or pressure, and under those situations I am likely to have a panic attack and essentially ‘run out’ of the workplace. Perhaps, through some miracle, that would be tolerated once or twice, but it would lead to difficult conversations with the company, and those conversations in their own right would lead to more stress and anxiety.

Ultimately these situations would inevitably lead to further depression, self harm and potentially suicidal thoughts. I know this, because it is exactly what happened the last time I tried working in the late 1990’s. I ran out of the work place after suffering a panic attack on my first day, and the following months were some of the deepest depression I have ever suffered, including suicidal thoughts, which led to referral to a psychiatrist.

Although my condition is now fully diagnosed and managed day to day with medication, that only allows me to operate literally day to day. The pressure of work, interview rejection, deadlines, change, and social interaction would inevitably cause the symptoms of my ever present illness to flare up.

The mere thought terrifies me. The whole process of engagement from the ESA terrifies me. In the last month, my desire to self harm has never been stronger and it is only the safety of my own home and family that has helped me rein those feelings in.

I urge you to reconsider my case and place me in the Support Group.

Random Update – The Gym

My first gym session was the 27th of July 2011.  Until then, I’d basically never done any exercise for the sake of it.  The status summary after lots of sessions is – still fat, but the devil is in the detail.  It’s entirely obvious now that I recover better after the aerobic equipment, and for me, that was most of the aim of going in the first place.  I was sick of not only being out of breath after exerting myself, but having to spend too long recovering my breath.

The aerobic stuff in the gym still gets me out of breath, still makes me feel knackered but I’m recovered in a much, much shorter period of time.  I’m pleased.

So I’m not visibly losing weight and I’m not about to start running any distance, but I’m definitely feeling the benefit.  It’s also true that I’m still not enjoying the actual exercise.  It’s not a chore as such, but it’s not something I do with any relish.  Having said that, I was looking forward to the overall session yesterday in the hope that it would work out some of the anger and frustration that had built up that day at work, and it did.

All in all, it’s been a good life change so far.

Gym Log, Star Date somethingfunny

This is mostly just a record for myself, so I can look back in a year or so and see if / how much my gym sessions have changed (I’m going to record the distances next time I’m at the gym and update this, because I can’t remember them all).  This is what my current gym session consists of (not in this order, I mix them up to keep thing interesting).

  • Recumbent Bike – Warm up – 9 minutes, ~70rpm
  • Treadmill – 8 minutes, 5.5km/h, 2-9% incline
  • Upright Bike – 8 minutes, 80-100 rpm
  • Wave Form – 4 minutes, level 8
  • Cross Trainer – 2 minutes, level 1
  • Rowing – 10 minutes, medium intensity (1800-1900m)
  • Arm Bike – 5 minutes, level 4, 5, 6, 7, 4
  • Lats – 3 sets, 15 reps, 20kg
  • Shoulder Press – 2 sets, 15 reps, 10kg
  • Chest Press – 3 sets, 15 reps, 20kg
  • Low Row – 3 sets, 15 reps, 20kg
  • Leg Press – 2 sets, 12 reps, 30kg
  • Abdominal Crunch – 3 sets, 15 reps, 20kg
  • Pectoral – 2 sets, 15 reps, 15kg
  • Adductor – 2 sets, 15 reps, 20kg
  • Abductor – 2 sets, 15 reps, 20kg
  • Leg Curl – 2 sets, 15 reps, 20kg
  • Leg Extension – 2 sets, 15 reps, 15kg (These make me want to die!)
  • Recumbent Bike – Cool Down – 10 minutes, ~80rpm

13/10/2011 – update: Leg extensions are only 15kg and Abdominal crunches only 20kg.

14/10/2011 – update: corrected a few other entries.

Exercise for the sake of it

I have never been interested in taking part in sport.  I’ve just never found it an enjoyable activity, sure I played football as a kid, and tennis in the street for two weeks of the year, but it wasn’t something I found engaging.  I don’t think PE at school helped, but I wouldn’t say it stopped me either, I just never enjoyed it.

And I never liked the idea of exercise for the sake of it.  Running is great if you enjoy running, but running purely because you feel it is good for you never sat well with me.  That probably explains most of the motivation for things I do – but anyway that’s a different story.

I’ve had a pretty sedate lifestyle (I know, with my physique you would never have guessed right?), although never being able to drive meant I spent my teens, 20’s and early 30’s doing a lot of walking, but these days it’s slowed even more.  We’ve not done any LRP events for 5 years or so, and my job is even more desk bound than it used to be.

There have been a couple of events over the last 12 months which left me feeling embarrassed or frustrated at how out of breath I was.  So I’ve been wanting to make a change.

But the real inspiration for what I’ve done (more in a bit) is Grete (@randomwittering on twitter, and owner of Bookthing, on twitter as @bookthing_uk), my amazing wife.  Grete has been going to the gym (and aqua aerobics) for nearly 2 years now.  I’ve been talking about maybe going for about 12 months, and I finally took the plunge a few weeks ago.  I had two inductions at the local council run gym, the first was good, the second less so.

But I eventually went for a full session with Grete, and have been a couple of times a week now for the past month and a bit with a short break.  I won’t say I enjoy it, it is after all, exercise for the sake of it in its most pure form.  I mean let’s be honest, walking at 5.5km/hour for 10 minutes with varying inclines is great except you never actually go anywhere.  So no, I don’t enjoy it, but it does make me feel good.

It makes me feel like I’ve made a positive change in my life which will hopefully result in things being better.  I’m never really going to change my eating habits a great deal these days – I made that change when I found I was diabetic and I’m just about living on the edge of what I can tolerate food-wise (although the last 12 months have slipped a little).  So I needed to make another change.  I’m not fit enough to ‘do sport’ even if I wanted to (which I don’t, maybe American Football, but not much else), and the advantage the gym has is that at least what you do varies during the 90 minutes or so you’re there.

So, thank you Grete for inspiring me to go to the gym, and for inspiring me to make a positive change in my life.

I can’t stop having the bacon cobs for breakfast, but at least I can burn off some of the calories walking nowhere for 10 minutes.

Blood sugar

I took my eye off the target (knowingly, complicit) and my blood sugar control is shot to shit.  The orange line is where I was in 2006, the red line last year, and the blue line is now.  They’re single day snapshots so not perfect, but they’re good enough to kick me up the ass.

Taking my head out of the sand and taking control is actually a good feeling.

Car and Body MOT

March was the month of MOT’s.  The car failed on the usual wear-and-tear stuff and we got it repaired and serviced and that set us back the neck-end of £400.  But then it’s the only time in the year we do actually fork out for the car unless it’s actually broken, so I can’t really complain.

I passed my MOT.  HbA1C result was 6%, which is a little higher than the last one, but still well below the 7% warning level and close to the 5-5% level in non-diabetics.  So that’s good news.  I need to work on it a little more, I liked the look on the nurse/doctor’s face when they see I’m diabetic but have an HbA1C of 5.7%, so a few points off the 6% would be nice.  Usual advice from the nurse, lose weight, do cardio exercise, eat properly, take care of my feet.  Can’t blame her for trying with the advice, and I think she doesn’t blame me for not being able to achieve it all.  It takes me a lot of energy to keep my sugar levels down to below 6%, mental and emotional energy, and cutting out all the other stuff required to lose weight as well would probably be the end of me.

Maybe I’ll try and start walking again at lunch times now the weather is picking up.

So, another year with diabetes, another year with good control, but no rest, have to do that every year, every time, for ever.

HbA1c results are in

5.8, which is really good. My GP is pleased, talked again about decreasing my metformin dose, but I’m loathe to jinx something that’s working. Maybe if I lose a stone or two I’ll change the dosage. He did say I could give up the aspirin if I wanted, since a) my sugar is under control and b) recent research suggests it’s not as useful in pre-heart-attack victims as it was once thought to be. I’ll see how it goes. Out of all of my medication it’s the one thing that has an obvious impact due to the blood thinning.

The other thing is that it’s HbA1c, not any other combination of those letters and numbers even though I can never get it right.  More than half my blog posts and tweets refer to it as Hb1Ac or something like that.  It’s HbA1c.  I’ll get it into my thick skull eventually.

5.8 – I’m chuffed!