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Getting Diagnosed

Its been a long time since I updated this blog. Having given up totally with ever getting any sort of answer from my GP I thought what’s the point of continuing complaining to my doctor who must had thought I was making it up.

It was roughly 18 months ago I went to see the GP with abdominal pains under the lower left ribs and it was found my liver was inflamed probably due to taking pain management drugs for years. Only a small dosage but almost every day to deal with the discomfort from the repetitive strain injury. At that time I thought my GP was being quite good as I had blood tests and scans, all shown nothing and then his interest quickly diminished despite the other numerous symptoms I was developing such as eye problems, dry inflamed skin, digestive issues, headaches and suddenly becoming lactose intolerant over 30 years of being a milk addict. I saw all three doctors in the practise who weren’t interested and insisted I had all the blood tests available to them. Later I found out this wasn’t true and their medical incompetence means I wasn’t diagnosed for another year.

Earlier this year I filled in an online form to move to another practice. Firstly I did it in a daze not realising that just filling in the form online would move me. Anyway I am glad I was moved as the new doctor on the very first visit took note of my symptoms and ordered an array of blood tests including ones not done by the previous doctor; vitamin D and complete Hormone panel. This shown some very wild numbers (low T numbers & widely high others)  and I was quickly referred to a local Encrinology clinic where I was given more blood tests and most importantly a bone density scan; a DEXA scan. The bone scan came back showing my T levels where low in the bones too and it shown I was actually suffering from osteoporosis rather than repetitive strain injury caused by a genetic syndrome that I was born with. If left untreated it develops into things like osteoporosis and worse since my body wasn’t producing enough testosterone.

What annoys me is that my original doctor had 20 years to diagnose me with what consultants have stated as “marked” symptoms – an other words bloody obvious ones and its not even that rare, something like 1:1000 suffer from the same genetic condition itself. Yet with 3 months of being with the new practise I had a clear diagnosis and started treatment. Treatment that just involves taking testosterone every day. Hardly hi-tech! This won’t cure the existing damage but will slow down its progression quite a bit. If I had diagnosed sooner then I wouldn’t have osteoporosis now.

My previous GP at best I think of as incompetent and at worse should be struck off. They were the sort of doctors that were more interested in doing charity work and going on holidays 6 times a year at the tax payers expense rather than treating their patients properly. The government are constantly going after those that are disabled or sick, where as rogue doctors that extract more from the public purse just get away with poor diagnostic results and a pat on the back. I would love to say bad doctors are a rarity but I just have any evidence to support that statement. What this does prove though is changing doctors is the best thing to do if you can’t get any answers. I wish I did so years ago!

So my advice to anyone. Ask your GP to do a full hormone panel and check for vitamin D, Calcium to exclude bone problems.  The doctor will be reluctant to offer a hormone test as it costs more than standard tests but if you have bone issues then that’s the spread of tests needed to identify the problem.

I do wonder if my original doctors reluctance was inspired by saving money or just plain incompetence. Either way it doesn’t show them in a very good light as so called professional people looking after the health of the local community.

Tunnel Vision

Last night after trying again to wear in my new glasses from Optical Express I was suffering from tunnel vision and everything was going really dark. It stayed like that for almost 2 hours after taking the glasses off. It was really frightening because I thought there was something really wrong or that the Optical Express glasses had permanently damaged my eyes.

I have tried to get used to them, but i don’t know why I should wear something that is very obviously wrong and is bad for my health. I will be returning the glasses next week and I hope they will fix it or refund my money.  I would actually prefer it if they could fix the problems as I need a pair of glasses or the money refunded so i can get them now. Waiting 28 days would be grossly unfair and expensive. Thus, no glasses for 6-8 weeks.  :(

Hows the RSI?

Its been a while since I gave everyone an update on the old RSI. I am still suffering from various symptoms, I think I always will have that background discomfort.

I have though improved enough to get myself a Samsung netbook which I find more comfortable to type upon than my desktop keyboard for blogging and writing on generally for short periods.  I wouldn’t use a net or laptop as a replacement for a desktop as I do think that they should not be used for extended periods of time ~ in fact it actually says that in the Samsung instructions somewhere I believe!

I do take regular exercise; including using weights, walking and activities like gardening. I am even thinking about growing my own fresh food as I’m sick of the cheap rubbish in the supermarkets lately. The trouble is the soil isn’t very good and it would mean some new top soil and lots of horse shit.

I still do get the hand numbness, pains in the neck, shoulders and spine. I still get that referred pain and hazy mind. I am still very forgetful to the extreme and to be honest it can be so bad where I can forget where I am for a while. That is a bit odd and it stresses me out when I’m on my own. I have SatNav for the car and I rely on other people for other times.

I am still taking the same amounts of breaks and sticking to my 30 hours per week with dedication. I am tempted to do more, but I know I physically cannot or I could but I would be unable to do anything for 2 or 3 weeks afterwards. So, remaining disciplined to a routine is really important for my recovery.

Motivation is something that is hard to maintain with a long term injury like RSI. There are many backwards steps that you have to take in order to move forward. Sometimes you are taking 3 steps back to take one forward, which is disappointing and it can be quite depressing. If you can accept this is the nature of the beast then I find it helps. It still upsets me, but I won’t dwell on it. Think of it like riding a bike, when you fall off you get back on and try again. Yeah, you may cry like a baby for a while but you still get back on and try again.

I think positive mental attitude is important and you have to learn to block or not to be concerned about those around that are being negative, but at the same time try to help by turning their negatives into positive. Just don’t let them turn your positives into negatives! It can easily happen, if you let it.

I still cant and won’t use a normal mouse. I use a track pad on the netbook and/or a vertical usb mouse on here and my desktop. I do use my netbook with a good posture not too dis-similar to when I am using the desktop.  Also, sometimes I do plug a big screen into it and use that rather than the tiny 10inch one. But for writing on the go, simple editing of pictures and other light duties its a very good solution. Well so far so good!

Anyway, I must stop now as the numbness is starting to return which means its time to something completely different for 10 minutes.

Optical Express Review

On Friday I went for an eye test at Optical Express. The only reason I choose them were because of the special offers they were running at the time; 2 x pairs for one if you spend over £100 and £79.99 for desginer wear including lenses.

Firstly the eye test did seem pretty good, but afterward I did feel that the optican wasn’t waiting for my eyes to refocus and assuming I can’t see the letters at all. Also the right eye takes slightly less time to re-focus but are just as blurred. Now they are even more blurred! I mentioned that my original lenses were fine but I’ve been getting some headaches on my right side.

The shop itself has a very modern layout with a huge range of frames to choose from. The problem is that there are too many and very few decent pairs or even vaguely nice pairs that are avaialable in the special offer or any offer. The staff at optical at the shop were very pleasent but the store, range of offers and their limitations seemed to be desgined to be as confusing as possible to customers and staff alike.

I overheard one member of staff tell another customer that if they spetnt over £100 then they get a free pair. They failed to mention all the limitations with that, that that only included frames on a small selection of poorly made sub-standard eye wear that even the most uncool of us wouldn’t be seen dead in.

In one shop the assistant we saw tried to explain to us that the special offers only included glasses that had a certain colored sticky label on the glass and others without a tiny colored label on them had other confusing labels too with yet more information. There was some at £79.99 that included from lenses and others at exactly the same price that didn’t. All very confusing and misleading in my opinion.

When I was in the consultation area I asked if they would measure my pupil distance because I may want to buy eye wear from elsewhere another time. I was told they can’t measure me for that and that if they measure it, it will go down on their records.  After rephasing the same question, it was found to be 66.

I eventually gave up and was feeling quite ill with the flickering lights near the cabinets. I paid cash for my eye test and asked for a copy of my prescription. The assistant firstly at no point offered me a copy of my prescription and secondly when I asked for it seemed reluntant to supply it. It was eventually produced on a normal A4 computer print out. Not on prescription paper, not little presentation folder, nothing. When you go for an eye test and have a prescription issued having a paper copy is not an optional item! The assistant informed me that if I came back within 28 days then I would get my money back for my eye test since it would be taken off against a pair of frames.

I left the larger store and proceeded to do the rest of my shopping. On my way I spotted a smaller store and popped in there. Not only were there a massive smaller range, but I was able to find a pair of frames that I liked within 5 minutes and the assistant appeared to be very good.

In the smaller store, this time my pupil distance was measured at 65, rather than 66. Also the offers were totally confusing. I wanted anti-glare coating to help when driving and I asked if that was “40 pounds” as the staff member in the previous job had said and he nodded yes it would be extra. Still I thought if I were paying over £100 then I could get a free pair of sun glasses right?

The member of staff produced from glasses from a cupboard under the main cabinet and asked what about these? And they were very nice. Just my style. He said the price would be £129.99 for 1 x pair with lenses, a anti-glare coating and a second pair of prescription sun glasses. That does seem a good price to me on the face of it.

I left the shop and then realised he hadn’t taken the price of my eye test off my purchase despite getting an eye test only a few minutes before hand admitively at a different store. Question, why didn’t there computer system remind him to do a £15 discount? And so we turned around and went back. He told me he couldn’t give a refund and to go back to the main store. I did and they said they couldn’t do it either and sent me back to the smaller store! Also its there company policy not to give refunds on cash purchase, but instead they had to send a check to your address for the same amount. That is correct, rather than giving £15 from the till, it has go to area office to be processed and sent out which is going to cost more in man hours! That is plainly rediclous! They offered nothing at all in writing to confirm they intend to send a refund and you had to take the word of the member of staff to remember to do it.

It was later on when I got home my Mum looked at the invoice and said theres something wrong with it. There was a price for the frames at £79.99 and then another cost of £50.00 for other frames and then £12.00 for the sunglasses which was taken off again. I only had 2 pairs of glases and so why the extra £50 and should that not be £40 for the anti-glare coating?

Mum went back the next day (shes always in town) where I go once every blue moon. Getting me into a city normally is a major achievement.  but anyway I digress. There was a different assistant on at the smaller shop who wrote on the receipt that I may have been over charged £20 and he also noted that there may had been issues in mis-communications – Just a bit, Optical Express seems to encourage customers to be thoroughly confused. Is it a case of tell them anything just to make a sale?

The glasses themselves, the frames I am happy with but the lenses are impossible to wear. I wore them for several hours on Friday and yesterday too whilst out walking and in the car. I quickly became to feel very dizzy, sick and it looked like some surfaces were floating away from me. The sickness was the same sickness I have when I don’t wear glasses but far worse. Also my right eye became to twitch and hurt allot. I was popping headache tablets on Saturday like sweets since the pain was so bad.  I don’t take many tablets normally, perhaps once a week if that.

Today, Sunday I woke up feeling really ill and I’m not even wearing the glasses. I can’t even stand up without feeling dizzy and just have to sit down. Is it right that I spend £129.99 on glasses that making me ill? That are impossible to wear?

Optical express also offers eye laser surgery, but I would let these incompetent fools anywhere near anything sharp. They appear they will take your money and give you a sub-standard product that is at best impossible to use and at worse dangerous when used for driving etc. You cannot drive safely with Optical Express eye-wear.

I don’t know what to do. Mum suggested that I should give it a week to get used to them before going back. The thing is I cannot afford to be off for a week being sick and dizzy like this if today is anything to go by. I guess I will give it a few days especially since I can’t get back into town this week probably. Its back to the old glasses.. Optical Express is a complete waste of time and money.

Hucknall Aerodrome

Today we only went for a short walk from Bulwell, past the Hucknall Aerodrome and continuing on criss-crossing the motorway several times. Its a good walk but not very challenging.

This weekend the Aerodrome was having some sort of air show, though unlike other years, the planes were parked at the far end of the field, meaning that I was unable to take any pictures from the side. I think the organisers must had done that on purpose to discourage people enjoying the planes for free.

A little way past Bulwell park itself is a stables and a small selection of houses at the end of a long drive way with a cattle gate at the end. The owners of the land were closing the gate and refusing access because of all the cars that were trying to park on their property for free.

Just as we were approaching the closed gate an unmarked police car with two uniformed officers drew close next to us. They wanted to turn their car around and wanted me to open the gate. I said to the gentlemen that they wanted to turn around and that they were policemen, but the angry man just didn’t seem to be listening and said “No they are not coming in here!” – Okay I thought and tried to tell him again who they were, but still he wasn’t listening. Hmmm

Then I asked whether we could come in as we wanted to use the public footpath. He said no and told us to use the public footpath gate which they had put a piece of barb wire on it holding it shut. If anyone even tried to open that gate they would end up in hospital sue-ing the bleeding idiot that put rusty barb wire on a gate post, just perfect to shred a child’s hand.

The angry guy’s face was a picture when the policeman got out of the car and was told to open the gate. Funny enough on our return journey past here the gates were wide open.

We walked past onto the footpath going towards hucknall and it was around here where I was able to take a couple of pictures of the aircraft in the display since they were using the location as a way point.

The shot below is a Hurricane:

Hurricane

And my favourite world war 2 plane is the spitfire and I was lucky enough to take this shot from almost the same position:

spitfire1

Both pictures are quite small since they were taken with a standard digital camera with only a 4 x optimal zoom and obviously being aircraft they were quite high up. The shots were taken at maximum resolution and then heavily cropped and sharpened when I got home using Paintshop Pro that I think I must have had for 8 or 9 years and it still does its job!

I did take some other shots of planes doing stunts expelling smoke but none of those pictures worked very well and just looked like a smoke with a few dots where the planes were! Perhaps I should had gone to the actual air show.

I enjoy these sorts of walks where different things happen like being buzzed by a spitfire. That doesn’t happen to me very often.

Dodgy Brain

This week I’ve been in a little better head space, up until about Friday when I started to have significant problems with my short term memory again. This is probably fatigue again. Its the end of the week and I am always a zombie. As I previously mentioned I do find it difficult to concentrate and it like the mind is in a haze.

I do have to force myself to do things, but I do exercise regularly even though it is incredibly hard and sometimes painful to do. I use dumb bell 3 or 4 times a week, I walk allot (see walking pictures) and I do more around the home too. Having a permanent state of exhaustion does mean I make a lot of mistakes, despite triple checking everything. Then when I’m sure I did something right, I doubt myself because I cant remember exactly what I did a mere 30 minutes ago.

When I’m out walking I don’t go alone, but with another family member who really gotten me into it in the first place. Because of my short term memory issues If I went on my own, I’ll “forget” where I am in relation to where I parked the car. I’m not joking.. And then I have a brain freeze moment.

Other things I have noticed when I do get lost in the car and ask for directions I can only often only remember 2 items the person said. Anything beyond that, I have to ask another person closer the destination. I am only in my mid 30’s, not in my 80s and I know this should not be happening.

All of this is probably long term fatigue (most likely) or it could be something more serious that my GP is too lazy and up himself to diagnose. I do have a very low opinion of the NHS in this country. They waste money on mid-management, ever changing computer systems and administration which does nothing for the patient. In fact all it does is divert resources away from front line services, into the pockets of contractors.

I do eat fairly well, all healthy food and some treats too. I have also noticed increased problems with my eye sight, but only a very slight decrease in clarity where I have to wear my glasses more inside rather than just when I’m outside doing things. Other than that, I’m fairly healthy! lol

RSI 2009

I have still not recovered from RSI, I get numerous flare-ups at completely random intervals. I sometimes think what else have I got to do. I steadily modify my own treatments, increasing and decreasing supplements, exercises of differing types and sleep patterns. Still, when it comes down to it I can’t say that I am cured, that I am like a person without repetitive strain.

I work hard with dumb bells and am lifting 10kg with extreme difficulty but I am doing it. Its painful, I feel weak and its something I have to force myself to do. I often feel like a person with zero energy and little motivation. That’s not because I am depressed, its a sort of lethargy and the feeling of just being permanently tired.

Sometimes I stand up to type because sitting down and standing back up again is just not worth the pain. Still, despite the flair ups, the constant pain, lack of quality sleep, numbness and other various symptoms, there’s no help from my doctor or the NHS as a whole. Instead, the nation suffers because of their incompetence and employers total disregard for the welfare of their staff.

Instead I struggle every day and fight to just have a clear enough mind to think straight. My memory is still absolutely appalling and despite checking things numerous times, I make the odd small error. When strangers pick up on it, I find it embarrassing and really confusing that despite all my checks I still managed to do it wrong.

In a way I feel like I’m twice the age I am. My body could be that of a 70 year old and my fuzziness and days of cloudy thinking could be easily confused as something that is suffering from early stages of dementia. Still, the GP and NHS can offer nothing for treatment or diagnostic assistance. I am left to do it myself, to try things and be a guinea pig. I’m left without any help what so ever and if I wasn’t for those that I live with, I would be totally screwed on those days I can’t even pick up a kettle on water.

I struggle with what I do sometimes, being self employed and writing for a living is really difficult in this recession. I am an affiliate marketer, but this involves so much typing and restricting it to 30 hours a week means I make a poultry income. Its really difficult to keeping my writing time to 30 hours, as historically speaking I would do double that just to make a below average wage.

At the moment I am going through a period of discomfort and my head is all over the place. What do I try next, what is left? I don’t know any more.

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