Upheaval

Currently our back garden is in a state of upheaval, I know that the end is in sight (fingers crossed it will be completed or at least almost completed over the Easter weekend) . We knew it would need to be done this year but had hoped that it would wait until the summer. At the time we had discussed the plans we still had the two Weimaraners and not a puppy who was hell-bent on discovering every piece of rotten decking and turning it into a huge hole, or carrying bits of rotten wood into the house.

I will be honest I don’t cope well with change, I don’t like not knowing when things will be completed. I must have a plan or my anxiety goes through the roof. I often wonder if my inability to cope with change, tell a story just going from A to B, rather than all around the houses, my problems with textures of foods, materials, clothing, dirt on my hands is a massive signal that I have some sort of sensory processing issue or the fact that I am on the Autistic Spectrum.

 I have noticed at my physiotherapy sessions that I take my therapists instructions literally, I have to look at her to see what she is asking me to do as invariably I will do the literal interpretation not what she has asked me to do. I wonder also if my need to control everything is also born from the possibility of being on the spectrum. I like order and control. I like a routine, changes in routine cause anxiety.

The other “issue” I have although I don’t see it as an issue it is just mildly irritating is that I will get fixated over words and repeat them endlessly in my head. A few years ago for months I was fixated on the phrase / word Beth Din after listening to a programme on radio 4 about Jewish courts ( a Beth Din) and getting a divorce ( a Get ). The word Get also became part of this never-ending repetition of words in my head. I now sometimes panic if I hear the phrase Beth Din worried that it will start-up the never-ending loop of this word bouncing around in my head. Sometimes I will also say the word out loud but it is always when I am by myself. That’s not deliberate it just tends to be when I am by myself the word loop can intensify if I am not distracted. 

I know some people might say that this sounds more like OCD but there is no dread or sense that bad things will happen if I don’t say them or have them on a loop in my head. It is just something that happens and I can go months without having a word doing a loop, today’s word seems to be parallelogram. The words can be because of the way they sound or the way my mouth moves when saying them. I know it’s a bit bizarre and I may regret being so honest about sharing! 

So as I said earlier I can’t get to a point without going around the houses and there was a diversion definitely in the paragraph above. So the garden looked ok to those that didn’t realise that a lot of the plant pots were covering holes in the decking. It was getting to the point where we just didn’t have enough pots to cover them as Dembe was always busy making more.

We are doing the work ourselves helped by friends who have offered up their time and expertise. 

On the Sunday Jay started he pulled all this up really easily as it was all completely rotten. The balustrade was also completely rotten through. Jay made a start before our friend Leanne came over to give him a hand. due to my medical conditions I am not physically able to help and it really upsets me that all I can do is plan and order the things we need. Whilst everyone else does the physical labour. Before I was sick I would have loved to have got involved ( wearing gloves of course!).

In 4 hours Jay and Leanne removed loads of the rotten decking but were stuck when it came to the joists. In some places the joists were rotten so it was easy to saw through them and remove them. However quite a few parts were not rotten and sawing them by hand was taking forever.

Jay asked one of his colleagues from work if their husband had a chain saw and within an hour they were here making light work of the joists that had caused so many problems.

Of course to complicate matters we live in a mid terrace, with no rear access. So everything that is removed from the garden has to come through the house. On the following Tuesday Jay removed all the decking and joists that had been piled up in the back garden and brought them through the house. Cue lots of mud and bits of wood. It then took him a couple of hours to saw the large pieces into bits small enough to get into our car. Thankfully it was only two car loads to get it up the tip.

The following Sunday, Mark who had helped us with the chain saw the previous Sunday came over and helped Jay remove the remainder of the decking and the joists. This time they took everything out through the house the same day so that Jay didn’t have to do it by himself on his day off. This last bit only took around two hours.

The next phase of the garden will be completed (fingers crossed) over the Easter weekend. Due to the soil being heavy clay and water-logged we need to install a drainage system called a French drain to remove the surface water or the gravel that will be going down to replace the decking will just turn into a bog. 

The garden did dry out a bit when we had a few days of sun and wind but as soon as it rains it turns back into the mess you see above.

I had to order 25 metres of land drain which is the black coil of pipe in this photo. Rather unrealistically I believed that it would come in a box – obviously my spacial awareness is lacking. It doesn’t look to big here but it is enormous and had to be rolled through the lounge and then the kitchen to the patio. The small amount of patio that Dembe has had to do his business on has got smaller and smaller as more items are delivered.

We have fence posts, fence panels, garden gate and 3x 800kg of gravel. For someone who likes order and routine it is a lot to deal with on a daily basis.

All the fence posts, panels and garden gate also need painted so we are waiting for three days of dry weather so that we can slap a coat of Sea Grass on them ( same as the fence in the photo above).

I know it will be fantastic when its been completed and that Dembe will have a lovely space to run around in, where he can’t slip and hurt himself or chew through rotten decking boards. And although it is being done earlier than we had planned at least we will have the summer to enjoy it. If its anything like it was last year Dembe will be getting a paddling pool to enjoy as he loves water!

So if everyone could keep their fingers crossed for a relatively dry Easter it would be appreciated.

Dangerous Medicine

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