bladder retention

Well it seems that the universe isn’t done with fraying my nerves. 24 hours after last week’s blog pots was published we found out that our car was in need of some expensive repairs. The repairs were going to cost more than the car was worth – just the cambelt change we had been advised would cost us £400 with the best case scenario. On top of that we needed to get the mid section of the exhaust repaired as Jay had gone over a stick or stone and that had removed the exhaust from its mountings. It is at times like this I really can’t abide this adulting shit. I wish sometimes that someone else would swoop in and fix it all but then that would mean I wasn’t an adult at all. At 45 I need to realise the days of someone swooping in have long gone.

Being nervous about my tooth extraction went out the window. Instead Jay and I had come to the realisation that as much as we loved the car we have that this was probably a slide into it becoming a money pit. With one of the hospital consultants I see an hours drive away we need a reliable car. Other than trips to the hospital we do very little mileage. But I can’t be sat at the side of the road waiting for the breakdown service.

I did a quick search online – this has been how I have found the last two cars. I thought I had found something ideal a silver Peugeot 207 Estate. It looked in good nick, nothing on there was screaming out to me. So rang the garage and this is where its gets bizarre. This garage was advertising on several well known sites yet when the phone was answered it was answered with just a “hello” not a “Hello XXX garage”. Initially I thought I had dialled the wrong number, so I asked if I had rung the garage, to which there was a bit of a pause and the guy at the end of the phone said yes. I then proceeded to ask him if the car was still for sale and if it had a recent cambelt change, full service history. The answer I got was yes the car was still for sale but he didn’t know about the cambelt or where the paperwork for the car was. The bloke sounded strange but I put it down to maybe he just wasn’t the full shilling. I should have taken a breath and realised how dodgy this all sounded. I mean a garage who answer the phone without telling you the name of the business, a car for sale ( and they only had 4 advertised on all the sites) and he didn’t know where the paperwork was. However I was stressed, I wasn’t thinking straight and we needed a car. Jay was dispatched by Taxi to the garage.

Whilst Jay was on route something was nagging at me about the car – my brain had finally engaged. So I did a background check on the cars history. Its cost me 50p and I could look up 5 different cars should I want to. What I found out concerned me, the car had not been on the road since 2017 ( which would mean an 8 year old car in 2017 hadn’t been able to be sold). It had failed its 2017 MOT and the list of fails and advisories were shocking. Ok I admit I had to google what half of them meant but even I knew a sub-frame failure wasn’t good. I messaged Jay and told him to come back. He messaged me back saying they hadn’t been able to find the garage – another bizarre thing, as the guy on the phone had told me the full address was on the website. However Google Maps had never heard of this garage. Thirty quid lighter and very stressed Jay got home with a migraine. He had to sit outside in the cold for a while, whilst I got him some pain killers and anti-sickness medication. He really did look rough.

So back to the computer I went, our options were being dictated by what was nearby and what boot size the car was as I have a mobility scooter and a wheelchair that I need to be able to put in the back. Most cars other than estates and people carriers just don’t have that kind of space. Just when I was about to cry with frustration I discovered a small garage 12 miles away that had a Renault Grande Scenic for sale, this was the next model up from what we currently drive so we knew the boot space was going to be ideal. I showed Jay the photos and I then rang the garage. This time I was told the name of the place I was ringing, which was a good sign! I then had a chat about the car and asked if the cambelt had been changed. The guy said no but it would be changed before we bought it.

I did another background check it was 22 days without an MOT and probably about the same for car tax. I looked through its MOT history it had passed it’s last MOT with no advisories ( for those of you in the USA etc who are unfamiliar with the UK system cars have to be checked every year by a garage after they are 3 years old. This is to check it is safe and its emissions are compliant with the law. Advisories are things the garage notes that tells you although it didn’t fail the MOT on those points they will need repairs before your next MOT.) It had failed MOT’s in the past but all the work needed to ensure it passed and all the advisories had also been addressed.

The problem was we had been advised that our Cambelt could go at any moment and we were only using the car now for essential travel. Where we needed to go was out in farming country and was down tiny single track roads. Should the Cambelt go out there we would effectively be up a certain creek without a certain paddle. Thankfully my parents had text me to let me know that they were up at their caravan ( about 3 miles away from us) so I rang them and explained the problem. They came to the rescue with my dad taking us over to the garage to have a look at the car. We took Dembe with us and he was such a good boy, as he isn’t brilliant in the car as he can whine a bit but he barely made a sound.

As we pulled up the the garage I could see that the owner had pulled the car out onto the tiny forecourt for us. Believe me I have travelled an hour to see a car at a garage in the past and found it at the back of the lot hemmed in by other cars despite them knowing we wanted a test drive! So that was another tick in the box. We had a look at the car, it was perfect for us. The boot was enormous and technically it is a 7 seater as there are two folded down seats ( completely flat ) in the boot. The car is big enough to take Dembe’s crate and my mobility scooter un-assembled. My mobility scooter comes apart so it can fit in the boot of a car.

As we were happy with the car the deposit was paid and now we play the waiting game. The car needs an MOT and whatever work needs done for it to pass, if it needs any. It will be having a full service, the cambelt changed and the rear drivers side passenger window fixed. It’s an electric window which isn’t working, not that we open the rear windows with Dembe in the back.

I am now going stir crazy as although Jay is still using our current car to take Dembe up to the common for his walks, I am not going with him as if the car breaks down I can’t walk home. I don’t have the ability or strength to walk should that happen. So I am currently going stir crazy as I haven’t left the house since Friday afternoon. Normally I go out of the house in the car about 5 times a week. That drive out onto the common, even though I just sit in the car, keeps me sane. It gives me something different to look at. I am at the point now where I just can’t wait to get outside. Of course this week I had a load of appointments my hospital appointment was booked for tomorrow so that has been cancelled. I was supposed to be at physio today but again its been cancelled due to not wanting to drive the car that far. The only appointment that is still going ahead as planned is my dentist appointment Friday for my tooth extraction. If we don’t have our new ( 2nd hand car) here by then I will take a taxi.

Whilst sorting out the replacement car I ignored the fact that I had a UTI brewing, which caused me loads of pain over the weekend and I am only just feeling back to normal now. Thankfully I already had antibiotics in the house so as soon as I realised it wasn’t just an irritated bladder I started taking them. So Saturday afternoon I ended up having to go to bed as I felt so ill.

So we are on the countdown now to getting the car, I just can’t wait to get outside and see something other than my home and the garden!

what’s a cambelt?

We all know that all medications and that medical procedures come with a certain amount of risk – the biggest being death. However in this day and age you would think it would be virtually impossible for a patient to die of neglect. I know mistakes can happen, they shouldn’t but they do. Someone I knew of, was acquainted with has died this week due to being falsely diagnosed with FI – Fabricated Illness. You can read about Shawn here (and yes the newspaper has managed to spell his name incorrectly.)

We were ( the CSF Leak group ) so happy when he made his way to Germany where he believed he would finally get the medical treatment he deserved and which the NHS had denied him for so long labelling him as having a mental health issue and fabricating his symptoms to get attention. Because Shawn dared to question the expertise of those he sought help from and because his condition was outside the scope of their knowledge, that label was applied and prevented all other medics within the NHS to seemingly be able to view his case with fresh eyes and objectivity. They all seemed to just cop-out and follow the notes of his previous doctors. If enough doctors write on your notes that you have fabricated your illness, it basically means all help is withdrawn and Shawn had to die to prove to them how sick he was. When all he wanted to do was live.

I am so angry and just so fed up with the medical profession’s arrogance and their inability to admit when they just don’t know. Too many people are being labelled as having a mental illness and when they eventually do get the correct diagnosis – the doctors are reluctant to remove the mental health diagnosis. I’ve had it happen myself, I ended up in hospital as my stomach had swollen ( I looked like I was pregnant with twins) and had reduced bowel sounds, I’ve had an intusscesception before as a child and I have had complications from bowel adhesion’s resulting in an open surgery to remove them. (info on intusscusception ) . As I was being examined a student doctor asked me how long I had been on seroxat ( an antidepressant) the year was 2010 and I had last taken seroxat in 1999. The suggestion being that the student doctor was already looking for a mental health diagnosis for my swollen stomach and reduced bowel sounds. She seemed surprised when I suggested she had a look at my more up to date medical notes and that I hadn’t been on seroxat since 1999. She was forming an opinion on notes from 10 years ago. It must make life so easy if you can blame the patient for being sick.

On another occasion I was in accident and emergency due to the indwelling catheter that I was having to use blocking. My bladder and bowel had ceased working the day before so the district nurse had been called in and a catheter inserted to relieve the pressure on my bladder and allow the contents of my bladder to be emptied. Having had a glance at my notes before treating me the doctor asked me how long I had been suffering with somatiform disorder. An unusual question to be asked when a catheter is being removed from your urethra. Again the diagnosis was 5 years out of date but had failed to be removed. A tilt table test ( well two) had proved I had PoTs and Orthostatic intolerance and a private rhuematologist had confirmed my diagnosis of Ehlers Danlos Syndrome. My Beighton scale was off the charts as I was bendy in joints that were not included on the scale, along with my slow healing, wide paper-thin scars, stretch marks as a child etc etc.

It doesn’t seem to matter if you have a “proper” diagnosis ( not dissing mental health here I suffer with depression and anxiety) if you have a whiff of a mental health diagnosis in your medical records all problems from then on will be attributed to your mental health issues. Just take the trapped nerve in my neck and the numbness in my arm last summer being put down to stress. It was only when I was losing my ability to grip with my hand and had a proper examination was I informed that I had an impinged nerve and if Physiotherapy didn’t help me I would be looking at spinal surgery.

I know so many people who are struggling with depression and anxiety who refuse to reveal this to their doctors and get help because they know once the diagnosis is on their records ( and especially if they female ). Many of them in the PoTs group I am (one of) the admin for I reckon 99% of the 4k membership were told that they were suffering from anxiety when they first went to their gp about their palpitations / near syncope. It’s a nice diagnosis for busy gp’s who only have 10 minutes per patient. The problem is so many people with chronic conditions are hiding depression and anxiety because they know they will no longer be taken seriously that we are now sitting on a ticking time bomb and there will just not be the resources to deal with it when it finally goes off.

Medicine is getting dangerous, it is ignoring those that don’t fit the text-book definition of the condition they have been diagnosed with and doctors are handing out mental health diagnosis without a patient being assessed properly by a psychologist or even a psychiatrist. I was diagnosed with somatiform disorder by a neurologist. It’s like having a podiatrist conduct your open heart surgery. It’s not a situation that would be allowed but many doctors who have no formal training in psychiatry or psychology are diagnosing conditions that will have detrimental ramifications on their patients treatment forever.

You can complain, you can ask for a letter to be put in your notes, explaining that you don’t have conversion disorder, Munchausen by proxy, Fabricated Illness Syndrome, Somatiform disorder but doctors can and do choose to ignore it. Keep shouting loud enough that you don’t have the condition and it just acts as more proof that you are mentally unstable. Cry in a medical appointment discussing these falsehoods contained within your medical notes and you will be diagnosed with depression. You can’t win, the doctors hold all the cards and something has to change because too many people are dying due to neglect. When I mean neglect I mean wilfully denying treatment due to arrogance or ignorance. It makes me sick to my stomach and I am so very fucking fed up with it.

The other one they like to use against you is medical knowledge, even if you come from a medical background like nursing and would know about the condition or symptoms you are talking about. I don’t have a medical background so have had to research things because I can not trust the doctors to do it. The last time I trusted a doctor I ended up almost needing spinal surgery, as they told me my neck pain and numb arm was stress.

Know too much about the condition and you are spending too much time on the internet looking up syndromes to have – real words spoken to me by an NHS consultant when I told him I was feeling the sickest I had ever felt. A few weeks later I was diagnosed with Meniere’s disease and a few weeks after that I found that my prolactin was raised and it was possible that I had a pituitary tumour ( thankfully I didn’t but we never found out why I was lactating or why the prolactin had been raised).

I have used the countless examples of where mental health diagnosis has been used as a cop-out by doctors to excuse their laziness / unwillingness to pursue the answer / outside their skill set on me to illustrate the point of how easy it is to suddenly find yourself fighting to be heard when you know you are sick. It is not in any way to take away from Shawn’s tragic story.

I am so angry because I have lost friends and relatives from medical cock ups. My dear friend who passed away last year was incorrectly diagnosed with COPD, only to be dead from lung cancer 7 months later. How they missed the tumours in her lungs and the one at the base of her spine I will never know. It wasn’t like she hadn’t had all the appropriate scans. The same mistakes keep being made and no one is learning the lessons the health authorities keep saying that they are.

I will defend the NHS and its principles with my dying breath but I can’t defend shoddy workmanship. The rotten apples need to be removed. The lessons do need to be learned because Sorry is no good when the patient has died.

I feel quite strongly that we are living in a time of very dangerous medicine, where the cheapest disease is the one diagnosed, where tests are denied when there is already a mental health diagnosis present of which the patient is either aware of unaware of. The system is broken when patients can no longer trust their doctors to first do no harm.

For more information on how easily you can have an erroneous diagnosis applied to you please check out the links

It also usual plays straight into their hands if you are female.

Functional neurological disorder / conversion disorder

Medically unexplained symptoms

Conversion disorder / Somatisation disorder

Management of MUS

Factitcious Disorder

munchausens-syndrome