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 If enough doctors write on your notes that you have fabricated your illness, it basically means all help is withdrawn and Shawn had to die to prove to them how sick he was.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




Back in January 2015, I wrote about my visit to the Bladder and Bowel clinic which you can find here. At the time, I had to allow some space between the visit and writing because the nurse had wound me up so much. I spent the whole appointment listening to her tell me how ill her husband was with PoTs and how she had chronic fatigue. I am an empathetic person and although initially I was pleased that she knew what PoTs was, I wasn’t happy that the person that spent the most amount of time talking was her and none of it was relevant to me. She may have been trying to be empathetic but how it came across was that she was in direct competition with both me and her husband for the title of “Who is the sickest”. It’s never been a game I have wanted to play and I am shocked by just how many people indulge in it.


I can’t lie I wasn’t exactly thrilled about the fact that I had to attend the clinic this week, that it was going to be with the same nurse, one that I had put a complaint in against and had specifically asked not to see ever again. It’s nice to know the NHS listens to its patients when they make a complaint against one of its staff isn’t it? **sarcasm** I had visited the dentist on Tuesday morning, so I was already exhausted and although I hate going to the dentist, I’d have actually preferred it to an appointment with this nurse. As my husband says (and apologies for the crudity) “She’s wetter than a mermaids wet bits”.


Before we left to attend the clinic I had already explained to Jay what I would and wouldn’t put up with. I told him that if she pissed me off I was leaving the appointment. I wasn’t putting up with the drivel I’d had last time. I don’t think he quite believed me but I meant every bit of it. I was particularly distressed at the thought of having to go through an intimate examination with someone who I just can’t stand. I appreciate that it is for medical reasons but it still would have felt like a massive violation. Out of all the people who have treated me over the years and are still involved in my care she is the only one that produces this type of visceral reaction. I have been lucky as for around the last 18 months I have been dealing with the Bladder / Bowel care team, (through telephone consultations), based in a different area so haven’t had to deal with her. Unfortunately if I want my care to take place at the local hospital I have to deal with her.


Anyone who knows me, knows I have a real problem with people within the medical profession claiming to know about my medical conditions and then by opening their mouths  prove themselves to be idiots. I can’t stand someone doing that to me. If you don’t know, say you don’t have any knowledge in that area, don’t bluff and make shit up. As a patient who suffers from rare-ish complications from an under diagnosed condition, I read up and educate myself because if I don’t no one will do it for me. Most people I know with Chronic health conditions do this to empower themselves. Obviously these days it is an awful lot easier with the advent of the internet. However there are still some medical professionals that refuse to believe that Joe public can understand medical papers or that anything on the internet regarding medical conditions is remotely factual.


Unfortunately the nurse I have to deal with at the clinic is a  chronic bluffer. I don’t expect a person to have extensive knowledge regarding each patient’s medical conditions that would be utterly impossible. She may see 15-20 patients in a day, all with varying medical conditions and no disease / condition affects the sufferers in an identical manner (despite what the medical textbook may have told you). So within seconds of entering the consulting room she had got by back up. I won’t pretend that I wasn’t already massively on the defensive, purely due to my dislike of her. She started with wanting a recap of what had been going on health-wise since my last visit and the fact that I had been so unwell that I had been reliant on telephone consultations.


Basically if you haven’t read my blog before in 2016 I developed a spontaneous Cerebrospinal Fluid Leak or CSF leak for short. This meant I had the most horrendous headaches imaginable every time I sat up, stood up or basically raised my head off the pillow. I spent much of 2016 confined to my bed, in a darkened room listening to audiobooks. When I look back now I can see effectively I lost a year of my life, I still to this day think last year was 2015. I can’t shake it even though I know its 2017, my brain just refuses to accept 2016 even existed for me. For a taste of what 2016 was like here is the first blog post I wrote on the subject called “Never a dull moment”.

The nurse asked me about my visit to the specialist hospital for EDS. It’s something I have never written about as it was such a raging disappointment. 90% of people who develop a spontaneous CSF Leak are discovered to have  or have already been diagnosed with a connective tissue disorder of which EDS if one of them. I had been referred to this clinic as the hospital I was being treated at wouldn’t perform an epidural blood patch (something that had an 80% success rate first attempt to heal the leak). The anaesthetists that would have had to perform the EBP refused on the grounds that I have EDS. So I was left in a Kafkaesque situation where EDS had caused the CSF Leak and the doctors who could get me better were refusing to because I had EDS. Now imagine my horror when 30 seconds into my appointment with an EDS specialist when he tells me “EDS doesn’t cause CSF Leaks”.


I relayed this to the nurse who told me “well he’s the expert, he would know”. I could feel Mr Myasthenia Kid grab my arm, he knew that this was like a red rag to a bull. I pointed out to her  politely and without the use of bad language that this wasn’t the case. So she then replied “ well if there is only a small amount of medical evidence, it won’t have been enough to persuade him” I am paraphrasing. How I didn’t lose my shit there and then I have no clue as I could feel the anger rising in me. Here I am sat with someone who has no fucking clue (let’s be honest) and she is sticking up for a doctor that has no fucking clue. I pointed out to her that there were 100’s of medical papers on the subject, that the CSF Leak Charity would love to educate her on the subject and that the charity EDS Support UK had a massive article on EDS and Spontaneous leaks in its last magazine. Her response “oh” not I am sorry, I didn’t know that or that’s really interesting I will look into that. Just “oh” because “oh” always makes things better right? You maybe able to tell that I am still very annoyed by this.

Her next statement was breathtaking in its inaccuracy “well it’s healed now” . My leak has semi healed, it’s not 100%. It is no longer at the level of the 2016 dark days however every evening or it can be in the afternoon depending on how long I have been upright for, I get a positional headache that will only go when I lie flat. The headache can vary in intensity but regardless of the level of pain it is always accompanied by photophobia (so I need to lie down in a dark room). This means most evenings by 7pm I am in bed. I explained all this to the nurse who again tried the empathy approach “ well that’s not very nice for you, having to go to bed with a headache how do you sleep?” For about the second or third time I had to explain that a CSF Leak headache is the only headache that improves or disappears when lying down. It was irritating me no end that she was pretending to know all about CSF Leaks when she didn’t even understand the basics.


She then said “well you may have noticed that I didn’t have the lights on in the office before you came in, I have chronic fatigue which gives me photophobia “ This was now the third time she had told me she suffers from chronic fatigue. Her next suggestion then proved she had neither listened to me nor understood CSF Leaks on any level. “Well have you thought about wearing dark glasses all the time to stop the photophobia?” Jay said he could hear the anger in my voice when I replied to her and said “ as I just told you, I only get photophobia when the CSF Leak headache starts in the evening, I don’t get one without the other. Wearing dark glasses all day won’t stop the photophobia, the only thing that would stop it and the headache would be to lie completely flat all day every day. As I did that last year and it has significantly improved, I refuse to do that now”.  What was her response ? “oh right”.


Thankfully after embarrassing herself (can you embarrass yourself and be totally unaware that you have done so?) she decided to actually talk about the subject she had clinical knowledge about my bladder issues. Unfortunately my bladder has been misbehaving for a few years. We believe I have a condition called neurogenic bladder, so I have issues with urinary retention. I also have leakage issues or on some occasions I just wet myself without even knowing that I needed to have a wee. Touch wood I haven’t had any retention issues for about 12 months. Back in the early part of this year the leak issues were horrendous and the worst they have ever been. They improved when I was given the medication pyridostigmine Bromide, also known as Mestinon. This gives the medical profession another massive clue that I have seronegative Myasthenia Gravis but hey what would I know I am only the patient?


The effect of mestinon on my bladder was immediate. I no longer needed to wear pads if I was taking mestinon regularly. I now only wear pads if my MG like symptoms are really bad as I know I will leak then or when I leave the house for medical appointments. I still don’t have the confidence to attend appointments without a pad on because i have had accidents in the past. The difference on and off mestinon is really night and day. Crazy really. It was thought that possibly I had Fowler’s Syndrome, to me it looks like I probably had neurogenic bladder and Myasthenia Gravis, as the bladder can be affected by MG.

The nurse was pleased that things had improved so much, although she had no clue why and a) I wasn’t going to explain it was due to the introduction of mestinon and b) I didn’t expect her to. We ended  the appointment on reasonable terms, she did understand that it was important for me to avoid UTI’s ( every time I use a catheter I end up with an infection) as it impacts the rest of my health severely and a simple infection could take me a month or more to get over. So she will contact the urologist and ask about an antibiotic to take as a prophylactic, in the hope that it prevents an infection starting. I have tried every way known to (wo)man to use a catheter but every time ends with me suffering with a UTI. So some good did come out of the appointment.


I don’t have the expectation when I see a new doctor or nurse that they will be able to fit all the pieces of the puzzle together. They don’t teach medicine that way and they don’t practice it that way either, which is a shame because so many conditions have a wide impact across many different systems of the body. I don’t expect someone who works in one area of medicine to understand another area. That would be like asking a Cardiologist to perform a hip replacement or a Plumber rewiring your house. I understand and appreciate that medical professionals are experts (or should be) in the areas that they work in. What I won’t accept are bluffers  or people who make it up as they go along and neither should you.


Pity party for one

Before anyone suggests it, this is not a cry for attention. It’s just an expression of how I feel at the moment. Only those of you who have a chronic illness or care for someone with one will get this. The title “Pity party for one” is a complete piss take. I don’t want a pity party, I want a break from everything that is going on at the moment.

It’s difficult to come up with a blog post when all you have faced over the last few weeks is a ramping up of your joint pain and unbelievably bad health (more than normal). I don’t mind joint pain when I have partaken in activities that warrant it. That’s pay back and its normal – for me. It’s when all you have done during the day is move from your bed to the sofa and back again, it really starts sucking all the joy from your life.
I have been in tears or close to them for a few days. This new level of pain has brought me down, I have upped my dose of painkillers but it doesn’t do anything much or it takes all day before I feel any relief. When the pain is bad I am convinced I am depressed, when it eases off I know it is the joint pain that is so badly affecting my mood that I want to go to sleep and not wake up to face another day of pain. That is how bad it is getting and I have no idea why. I don’t want to die or do anything stupid. This is not a cry for help. This is the sheer level of frustration you feel when you are on a runaway pain train. You do not know how you will possibly get through the next hour let alone the other 23, only to face it again, day after day.

You get through it, you don’t know how but you do. The exhaustion leaves you feeling like a zombie and wipes out any reserves you may have had. I don’t know how my body still functions but it does. I know at some point I will get back on top of the pain. I just don’t know how or when. I am sick of waiting.

I can live with a certain level of pain. I have had to, I spent from 1999 to 2011 without medication because I couldn’t get anyone to believe how awful the pain was. I have been on top of it for a few years with the occasional flare up. This pain flare up has building for a few weeks. Its changed from the constant aching to a sharp pain that is unrelenting. I can only describe it as feeling like my knees and hips have been replaced with metal spikes. Every movement feels like the metal spike is rubbing along the bone beside it. Today every time my right foot went to the floor I wanted to cry. I hate using walking aides in the house as they are so very limiting – you can’t carry anything when you use a stick, frame or crutches. I tend to use the furniture to help me hobble around. I seriously considered using my crutches, for me to even say that out loud means I am in a considerable amount of pain.

However I am conscious that I need to keep moving. One of the things you do when you are in pain is limit your movement, its only natural to stop doing something that hurts. With EDS we need to keep moving as much as we can, as not using a joint could mean in the long-term more problems. It’s hard to keep that in your head when you want to scream every time you put your foot to the floor.

I am not looking for sympathy, I am just giving you a peek into my life. Its the bits no one sees because I wont let them.  I hate feeling this miserable, I hate the pity party I am currently throwing myself, it just isn’t the real me. It wears you down, exhausts you and causes you to draw into yourself rather than live in the real world. I am at times too exhausted by it all to speak.
You would never know if you saw me in person. I am good at hiding it in plain sight. I can keep a fake smile plastered on my face for a couple of hours. I can keep a light and breezy conversation going whilst my vision goes grey as my blood pressure drops. I have become so good at hiding the sick me, I sometimes doubt how ill I am myself. Then reality strikes, as on Sunday when I lost the ability to urinate again. Thankfully for some reason I could place the catheter when all attempts on previous days had failed. Its only when bits of me stop working properly that I have to acknowledge that life is not normal. I am left asking myself how did I get here? What happened in 2007 to change the course of my life so dramatically? I have no answers.

The only person that ever sees my struggle is my husband. I would be lost without him. He is the only thing that keeps me going at the moment, well him, the dogs, my parents, my sister and her family. I am struggling underneath the weight of this pain. If I could just get some relief just for a few hours I would feel like me again. I wouldn’t have to wear this mask that I hide behind for fear of people seeing how weak and vulnerable I am.

I am sorry if this post seems negative. It’s not meant to be, it’s a picture of what life can be like when you are chronically sick and trapped within your house because the pain and stimulation of the world outside is just too much for you. I rarely feel as low as I have for the last few days. I know at some point I will catch a break and I will feel better – better than I do right now. It will happen, it always does, that is what I cling too. 

“This too shall pass”

My Urethra moment!

**** Graphic Content Warning****

No I didn’t spell eureka wrong, you read the title right. It is a deliberate play on words. I want to talk about self catheterising in this post, so if you are of a delicate constitution or think this couldn’t happen to you please stop reading now. I will be approaching this subject in my usual no holds barred type of way because I believe in honesty and not sugar-coating things.

My appointment with the continence nurse came around all too quickly. Nervous didn’t quite cover it. From June last year various health professionals had decided that I needed to be taught how to self catheterise  due to a bout of acute urinary retention. This is where for some reason, usually neurological, the valve at the neck of your bladder refuses to relax so that you can produce urine. When it happens the pain is immense. You have the feeling that you urgently want to go for a wee but you either can’t go at all or you just have a drip, drip, drip of urine. Which doesn’t empty your bladder and you have the sensation your abdomen contains a balloon that could burst at any moment.

 The home visit from the nurse had been set up to teach me how to insert a catheter myself, preventing acute urinary retention from happening and thus negating the need for me to have to wait to see the district nurse, who would fit an indwelling catheter which would be left in situ for a few days increasing the risk of infection. Plus last time I had an indwelling catheter (this just means I have a catheter that is connected to a bag in which the urine is drained. It stays in place by means of a small saline filled balloon that sits on the bladder neck. It is uncomfortable, embarrassing and difficult to dress around. The urine collection bag is strapped to your thigh so you can not wear close-fitting trousers. You also have the constant fear that the bag will burst!) it blocked the next day leaving me in agony as my bladder went into spasm.

A few weeks before the nurse came to my home, I was sent a booklet explaining how to self catheterise and also a DVD – which I will get to in a moment. The booklet contained illustrations which featured a woman self catheterising, it was done in a tasteful way which didn’t really address the situation head on. To self catheterise you are going to have to get really familiar with the geography of your nether regions. I mean let’s be honest how many of us could look in a mirror and identify where the entrance of our urethra is? You know (if you are female) you posses a clitoris (yes I said the C word!) a vaginal canal but where do we pee out of? Have you ever looked or felt? I mean why would you? I know I hadn’t until last week.

It’s not a subject we females feel  comfortable discussing, it has only become an acceptable concept of late that the female of the species do masturbate and enjoy it. However it is rare to find a woman who will openly admit that she does. The female genitalia still seems to be shrouded in mystery and to openly admit you’ve touched yourself in that area is still met with wide-eyed horror. It is accepted that men do it so why all the fuss about the other 50% of the population? 

I knew the rough geographical location of my urethra but only after watching the DVD from which I am still baring the mental scars. I don’t know what I was expecting when I watched the DVD the day before the nurses visit. I knew it wasn’t going to have much of a storyline and had prepared myself for the possibility that there would be an animation demonstrating the catheters insertion. Oh how wrong I was! Out of no where it cut from a scene of an anonymous woman washing her hands to me being confronted with a woman’s nether regions, accompanied by music and a voice over of how to place a catheter. I am not a prude in any way, shape or form but I was taken by surprise at the graphic nature of the content. As a woman (if you are heterosexual), unless you are a Doctor, Nurse or Midwife, we don’t get up close and personal with another females genitalia. So viewing one on a 40 inch HD TV did come as a bit of a shock. Especially when there was no warning on the DVD cover that this would be the case.

Once I had got over my initial shock, some of which was based on my fear of the procedure, I had to agree it had been quite helpful. I now knew where my urethra was to be located. As a help for those of you who don’t know below is a really crap drawing of which I am the artist. My husband said it looks at worst like a road map containing several roundabouts or a piece of abstract art at best!

I decided that I would learn how to self catheterise by touch alone, this was after much consultation with my sister who before having a sacral nerve stimulator placed was in the same boat as me and had needed to do this also. She told me that you needed three hands to be able to insert the catheter. One to hold the mirror (if you are doing this by sight), one to hold the labia open (so that you can see your urethra) and one to insert the catheter. The catheters that are provided for you to use do not tend to come with bags like the indwelling ones do, so you have to catheterise over a toilet. My sister informed me that the bags that can be provided are not very reliable and can leak. My sister was taught in a hospital setting, lying on a bed which doesn’t transfer well when you are at home trying to do it on the toilet. 

Doing this procedure by touch alone meant I needed to know what my urethra felt like, so I had to have a rummage. I found it easy to identify as the opening although small does have a different feeling to than the skin around it. Under the tip of my finger it felt like it had a slight wavy edge  and it dips in, so it is not flush (sorry couldn’t think of a better word) to the rest of the area around it. It took a little time to suss out but I wanted to be confident that before the appointment, I could at least identify the area of my anatomy that would be coming under close scrutiny!  If you are going to play hunt the urethra yourself just because you are now curious, go ahead however make sure you do so with clean hands. Self catheterising is taught with a clean hands approach to avoid infections, so even just trying to find it should be done in the same way. Infections are easily transferred into the urethra – even wiping the wrong way can do it so please ensure your hands are very clean before having a rummage.

The morning of the nurses visit I was absolutely terrified, my heart was racing (nothing new there) and I felt sick. I was convinced that I wouldn’t be able to do it and the nurse would have to come and help me. I am intensely private about my body. You may now be falling off your chair laughing right now. What I mean is I find this stuff easy to write / talk about but to show you any part of my body that would normally be hidden under clothes just isn’t happening! 

The nurse was really lovely and incredibly funny. She put me at ease immediately which helped me relax (a tiny bit). I couldn’t relax fully as I knew at some point I would have to try to insert a catheter myself. She was very pleased that I had watched the DVD, read the booklet and had located my urethra. She told me it wasn’t uncommon to speak to women (of all ages) that had no idea that they didn’t urinate out of their vaginal canal. Also due to the taboos surrounding vagina’s, many of  the women she see’s hadn’t examined themselves to locate their urethra. I know psychologically it is a hard thing to admit that you need help to urinate, maybe the women’s refusal to examine themselves is also part of that mental block? My thinking was if I found it myself I wouldn’t have the nurse showing me, maintaining my privacy. 

The nurse was a bit like a travelling sales women, with her large black bag which contained  a vast array of catheters. Who knew there were so many different types and so many different sizes? The two I decided to have a try with are pictured below. The green one is  a Coloplast, which has a more rigid tube and the Hydrosil Rose which is made from silicone and is more flexible. Both are self lubricating. The Hydrosil Rose as you can see has a silver packet in it which contains sterile water. Before opening the packet you pop the bag by folding it over and then the water activates the lubricant on the tube. The Coloplast also is lubricated and that is released when you twist the tube open. Both packets have to be agitated ( a bit like a bottle of nail varnish before painting your nails) to ensure the lubricant is activated. It sounds complicated but it really isn’t. I chose the smallest size available as anything larger just made my eyes water. 

Please be aware that the whole of the tube is not inserted! The pink section on the Hydrosil and the green section on the Coloplast are the handles. Just the small tube is inserted and only to the point of when urine starts to flow through the end of the handle.

I just want to state for the record I am not being paid to mention or endorse either brand of catheter and I am not receiving payment of any kind. They just happen to be the catheters that my local health authority offers.

Once the nurse had run through the basics of catheter insertion it was my chance to have a go. I trundled off to the bathroom alone and full of dread. I really wanted to get this first time. A friend had been through the same thing recently and had cracked it in 10 minutes. I thought to myself “how hard can this be?” and then spent the next 5 minutes swearing and failing miserably. No matter how hard I tried I couldn’t get the bloody thing to go in. I was in the right place, I just couldn’t insert it. I had chosen the Hydrosil  to try first and I realise now that this was probably a mistake (for me others maybe more successful with it using it for a first attempt). With the tube being silicone when it came up against any resistance it simply buckled under any pressure. Had I chosen the Coloplast with the more rigid tube I may have had more luck.

For a few minutes I sat on the toilet, trousers around my ankles summoning up the courage to call the nurse for assistance. I plucked up the courage and she came to my aid. This was where the hilarity really began. My bathroom is uber small and has no natural light. We had to engage in a session of hunt the urethra with the nurse on her knees in front of me using a mirror to get more light on the area. At this point giggling my head off I offered her the head torch we keep in the car for emergencies. We had to stop for a moment to compose ourselves. She confirmed that I was in the correct location, so at least I had got that right. However she was going to have a go inserting it….oh joy!

It really bloody hurt, she also struggled to get the catheter past the opening of my urethra. I was desperately trying not to climb on top of the toilet cistern, with the normal human reaction of getting away from the thing causing pain. Eventually it was placed but it caught the nurse out, my urine drained all over my knickers, jeans and bath mat. Again I couldn’t stop laughing, which I think was to the relief of the nurse who had just covered me in my own urine. I informed her that I had debated wearing socks that day just in case this very thing happened. With no bag on the end of the catheter urine runs freely through the tube. If you don’t have the end placed over the toilet bowl accidents will happen, even to consummate professionals.

If I thought it was painful on the way in, nothing could prepare me for the agony of its removal. I kept begging her to stop as it felt like my insides were being torn out with it. My sister had warned me that catheters could feel like you were shoving a cheese grater up your urethra. I had laughed at the time, I wasn’t laughing now. I had tears in my eyes as it was eventually removed. I thought to myself if it is going to feel like this every time I use one I don’t think I can do this. I know I can be a drama queen but when it comes to pain I am pretty hardcore. This was extremely uncomfortable.

The nurse left me with 36 catheters to practice with, in a few days she would ring me to see how I had got on. She wanted me to get used to doing the procedure alone and to find out which type of catheter I preferred. Ordering the products is simple, the nurse sets up your account, then every month the company rings you to see what you need. They then contact your GP’s surgery who write the prescription, fax it back to the company who then send out your supply via a courier. I did have the option that the prescription could be sent to my local pharmacy but I like to save my husband from the embarrassment of picking up catheters. I opted for both the Hydrosil and the Coloplast. I found the Hydrosil more comfortable to use but some days I really struggle to insert them and that is when the rigid tube of the Coloplast comes in handy.

 I tried to self catheterise later on in the day of the nurses visit, four attempts were unsuccessful, I was at the point where I believed I was never going to get this right. The fifth and final attempt of the day (I had decided as it was getting frustrating, with my confidence at an all time low) I did it. I was so proud of myself that I had done this that I wanted to shout it from the roof tops. It was much less painful doing it under my own steam. I think when the nurse did it I was just so stressed and tense that this had caused some of the pain. I had a new-found confidence that I could indeed do this. It was going to take me some time to master it and I was under no illusion that I would get it right every time but I now knew it was not  mission impossible.

I tried again on Sunday managing to do it twice and on both occasions it went in first time. I was on a roll however the pain was back and there was blood on the tip of the catheter. This was nothing to be alarmed about all the literature and the nurse had warned me there maybe some bleeding when first doing this. The tissue in this area is very delicate. The urethra would eventually toughen up and the bleeding would stop. It’s still hard not to react to the sight of blood no matter how minute the amount. It was just a smear of blood on the tip of the catheter.

Monday I managed to do it again and when the nurse rang she was pleased that I was progressing well. She reminded me that there would be times that I would find it difficult. When I was struggling she told me to step away from the situation, go and have a cup of tea and try again later. She was so right that there would be times that I would struggle. After several successful attempts Tuesday was full of disasters. I went through six catheters attempting to practice my new skill. Again I got to the point where I thought I would never get it right again. With perseverance I was successful later on in the day. It is easy to see how you could become disheartened by the whole process.

I am lucky in the fact I don’t have to do this every time I need to urinate. I will only need to do this a couple of times a week. It is still sore, but bearable and more than one attempt a day leaves me with bladder spasms, which are easily controlled with muscle relaxants. I still find it quite daunting every time I attempt to self catheterise. I have found the best approach is to be as relaxed as possible. If I am tense at all I can’t do it. I am worried that I will have a bout of acute urinary retention before I have mastered this completely and under pressure I will not be able to do it. So I must practice, practice, practice so that if I do need to do it for that reason I can. 

I don’t want to put anybody off doing this, I am only reporting my own experience. If you need to learn how to do this there is nothing to be frightened of and the upside is it means no trips to the hospital when you can’t urinate.

This post is dedicated to my sister and to my friend KH. Thank you for sharing your experiences with me.

The not so glamorous side of chronic illness part two

I had to leave some distance between my appointment with the specialist nurse at the Bladder and Bowel clinic, so that I could gain some perspective on it. All that has done has made me more annoyed, which be explained in more detail as you read this post.

The clinic was held at the local hospital, so no long trek into the city with a full bladder. It wasn’t until 45 minutes before the appointment that I remembered that a full bladder was a prerequisite. I downed two cups of tea and a 250ml bottle of diet coke to ensure the job was done well. I then squealed as we went over every bump in the road as I was busting to spend a penny.

I was seen right away and ushered into a room with an examining table a few chairs and a desk. The nurse introduced herself and seemed on first appearances quite reasonable, if a little wet. I was trying my best not to come across as hostile, I have built up this defence mechanism over the years as it leads to less disappointment. I handed over my questionnaire that I had been asked to complete prior to coming including the results from operation “measure my piss”. I had fully expected that my bladder would be scanned on arriving then I would be allowed to relieve myself and be scanned again but no this didn’t happen for what seemed like an eternity. We went through my questionnaire until in the end I had to tell her I was about to wet myself. She seemed surprised, which alarmed me because after all this was her job to look after people with bladder problems, who had come to the clinic with a full bladder as the letter had informed them they had to do.

I was handed a diamond-shaped cardboard dish and told to produce a sample and come back. I managed to fill the receptacle with ease however as normal the flow of urine stopped. I could have strained, changed position as I would normally at home but I decided this was pointless if they were going to scan my bladder to see if there was any residual urine. When I returned she scanned my bladder – roughly pressing down much too firmly for my liking, to the point where I was concerned that I would wet myself. She turned at this point from someone who had been reasonably pleasant to someone whose feathers had been ruffled. She snappily announced that I had 350ml left in my bladder although the scan couldn’t be as accurate once the amount passed 250ml. She made me feel like I had done something wrong by proving I did indeed have issues with my bladder.

The next thing on her hit list was the amount of fluids I consume. This was all done under the guise of it would be knocking out my electrolytes. Had she bothered to read my notes at all or have read my prescription list she would have seen I take salt tablets and Fludrocortisone. Again I felt like I had to defend myself, explaining one of the main symptoms of Dysautonomia is excessive thirst and I had drunk like this all my life. 

During the preamble before I had been allowed to empty my bladder she had informed my husband and I, that her husband had Postural Orthostatic Tachycardia Syndrome – like it was a badge of honour. She also told she had been diagnosed with Chronic Fatigue Syndrome, although I am left wondering to this day what relevance this had to my own issues. It’s not that I wanted to be star of the show but when you attend a medical appointment you expect to be discussing your own issues not that of the medical professional and their spouse.

During the appointment I found out that her husband and I shared a hospital consultant. Her husband had been given the advice to drink 3-4 litres a day. She announced quite proudly that he was on 3 salt tablets – a day. Again I didn’t understand where the competition element was coming from and explained that I was on 6-8 salt tablets a day and that the consultant had never set a limit on how much I could or couldn’t drink. She couldn’t get her head around the fact I didn’t solely have PoTs anymore, my condition had worsened. She never really let me explain about my condition as she was too busy interrupting me to tell me about her husbands awful fatigue and chest pain on exertion. It’s almost as if she couldn’t see me sat in my wheelchair slumping further and further down as I could no longer hold myself up. I came away thinking I am sure this was my appointment where I was supposed to talk about my issues.

When she had informed us that her husband had PoTs both my husband and I were relieved that we wouldn’t have to explain everything as we assumed that she would have done some research into the condition. How wrong we were, this was worse than having an appointment with a medical professional with no clue. It became clear that when I rattled off a couple of well-known websites for those with PoTs or Dysautonomia she had never heard of them. She was clueless and could only go on her husbands symptoms which with it being a syndrome and the fact that mine own condition had progressed past that of PoTs were largely ignored. I had described my condition on the questionnaire as Severe Autonomic Dysfunction, she understood what the autonomic nervous system was but couldn’t get to grips with how the disorder affected me. Perhaps if she had listened she might have done. She admitted she had heard of Ehlers Danlos syndrome but had no knowledge of it, despite her happily telling me I was the third person on her books with the disorder. Maybe I am being a little hard on her but if I was a nurse looking after three people with the same condition, I would have done a little research about it so I would be more able to understand the challenges those patients face. 

I was becoming irked by her lack of knowledge and the constant comparison between myself and her husband. I felt by the end of the appointment if I heard one more mention of her husbands fatigue I may swing for her. She has no clue that on returning home from the appointment – the first time I have been properly out of the house since the 19th December, I went straight to bed such were the levels of my fatigue. Her opening line in the appointment when going through all my medical issues had wound me up – “Oh it’s not much of a life for you” said in such a way that it was assumed that I had a choice in the matter. I responded with “life is what you make it” because I believe that to be true. I live for the good days and manage the shit in between. Maybe I am being too harsh on her maybe she was trying to be empathetic and compassionate. It wasn’t doing anything other than rubbing me up the wrong way and I had to play nice as she was the gateway to me receiving additional treatment.

Have you ever been made to feel guilty about drinking 250 ml of diet coke a day? I have, the way she banged on and on about my diet coke habit you’d think I was drinking 25 litres a day not 250ml. She just wouldn’t let it drop I was quite amazed at how she let rip. Then next came my tea consumption, now I admit I drink quite a bit of tea 8-10 cups a day but as I am awake from 3.30am most days I don’t really think its excessive. Just to shut her up I told a lie and said that they were decaffeinated, all she did was go back to attacking the diet coke again. I couldn’t win with her, it was kind of “mother knows best” vibe I was getting from her. My husband and I have now labelled diet coke as “the devils juice” and laugh hysterically every time I drink it.

It was obvious that she has the same line of patter for each appointment, that caffeine is the work of Beelzebub, along with fizzy drinks and artificial sweetener, all three of which I consume. I was made to feel again that I had brought my bladder problems on myself. My chart was showing her I had an overactive bladder as I was passing less than 250ml on occasion and going 3 or 4 times in an hour. Overactive bladders are caused by a variety of reasons. Some people ( note not all people ) do find relief when they avoid or reduce their caffeine, fizzy drink and artificial sweetener consumption. I was told that I must stop these immediately. I also had to retrain my bladder so I needed to ignore the messages of needing to urinate and try to increase the length of time I hold on. I also needed to start doing pelvic floor exercises at least 4 times a day.

I did manage to squeeze into the conversation that a close relative of mine has Fowler’s syndrome and has ended up with a sacral nerve stimulator. The nurse again was a bit prickly informing me that if I had that then catheters wouldn’t work on me. I pointed out to her that whenever I have been catheterised nothing passes into the bag. I have to take copious amounts of buscopan to relax the valve on my bladder, walk about, drink, cough etc all in all it can take anywhere from 10-40 minutes before my bladder valve will relax enough to let the catheter work. I almost ended up in surgery in June 2014 when my bladder failed to drain for nearly an hour. It really annoyed me that she seemed to dislike me for having more knowledge than her. I guess she wanted someone who would just let her witter on and not interrupt or challenge her.

However she did concede eventually that there was something neurological going on with my bladder due to the acute urinary retention I keep getting. I have been referred to the hospital for urodynamic testing – which maybe a problem as I am allergic to the dye they place in your bladder, I did mention in my questionnaire I was allergic to it. I am also supposed to be being taught at home how to self catheterise so that I can empty my bladder fully before going to sleep and any time that I feel it hasn’t emptied completely. Most days then. I can look forward to having to see her again after being taught how to self catheterise as she will scan my bladder to ensure that I am doing it properly. I am looking forward to being treated like a naughty school girl again no end.

The funniest part of the appointment was when she told my husband if it was easier for me he could learn how to insert the catheter for me. Both of us recoiled immediately. Why on earth would I want him doing that? I can’t think of anything I would like less! He can’t even be in the same room as me when I am injecting my medication. How on earth would he manage to do it without passing out? A firm “No thank you” was uttered by him and seconded by me. He then added “We like to keep our hobbies separate”. I could tell when he said this he had reached the end of his tether with her also. He went back to playing Angry Birds on his phone. 

During the appointment because it was about stuff that makes hubby feel sick (and who can blame him), he kept his concentration focused on playing Angry Birds so he could block out what was said. Unfortunately the nurse didn’t seem to understand he wanted very limited participation in the appointment and kept trying to engage him in conversation. He really wasn’t being rude, he is very supportive of me, he just isn’t so great in a medical setting which is absolutely fine as I can advocate for myself.

There is one thing that keeps going around in my head that really annoyed me (and yes there were some parts that didn’t) which was when I jokingly mentioned that one time when measuring my urine the jug had overflowed making the measurement way past 700ml, she immediately snapped back without a moment’s hesitation “well I have passed 750ml”. I just thought, Jesus you must be an absolute barrel of laughs to live with. Not only had I been entered into competition with her husband, I was now in a real pissing contest with her. What the hell was going on here?

I will be completely honest I have not ditched the devil drinks, why? Because I only get an overactive bladder on the days leading up to urinary retention. I have however started holding on longer rather than going the moment I feel the need to go, which at the moment is working fine. I had got myself into the habit of going frequently because in the past I have found holding on leads to me contracting UTI’s or having bladder spasm or finding that I am unable to urinate properly. If I find the new regime on holding on leads to UTI’s I will go back to not holding on. Had she given me the time to explain any of this maybe her advice would have been different. 

It was disappointing that the session was dominated by her and her husbands own health issues, not my own. I would have liked the opportunity to properly explain and discuss what was going on with my bladder and bowel. I wasn’t given that opportunity. It is a shame that the skill of listening to the patient wasn’t employed during this appointment.

Looking back on it now I consider it one of the weirdest and most surreal appointments I have ever attended. Should I have been in the position where I would never had to see her again, I would have happily written a complaint about her. My hands are tied at the moment with her being the one to refer me and organise me being taught how to catheterise myself.

UTI – Urinary Tract Infections

PoTs – Postural Orthostatic Tachycardia Syndrome

The not so glamorous side of chronic illness

On TV and in films being chronically sick is always presented in such a glamorous way. The protagonist always has perfect hair and makeup, tonnes of visitors and there is never any mention of bodily functions. My blog intends to be a real insight into my life with chronic illness. So that is your graphic content warning. This is nothing like the Hollywood blockbuster portrayal of chronic illness.

This week I shall be checking my dignity at the door when I visit the Bladder and Bowel clinic. My appointment has been set up because I need to be taught how to self catheterise due to ongoing issues of being unable to urinate for hours at a time, only to then end up in acute urinary retention. Apparently one can not simply be taught to self catheterise – even after being referred by two district nurses and a general practitioner, you have to attend a clinic where before you even set foot in the door you have to answer a highly personal questionnaire and measure input and output of fluids.
I understand the need to ascertain why I am having problems in this department however I would have preferred to be taught how to self catheterise first so that I could avoid the painful bouts of being unable to empty my bladder first. Maybe I expect too much but I would have thought reducing someones pain would be the priority not prolonging it.
I received the letter inviting me to my appointment between Christmas and the new year along with a humongous questionnaire and a sheet for me to write down (for three days) how much I drank and how much I subsequently urinated. For the uninitiated you can’t simply guess how much you have urinated but actually have to measure it…..in a jug. I was not impressed with how the information was presented to me the covering letter made no mention of filling in the questionnaire or the pink sheet that I needed to fill in prior to the appointment. I did wonder how many patients turn up to the clinic having not filled out either and it’s a simple fix just to include a few lines stating the paperwork enclosed needs to be completed before attending.
I ended up having to buy two plastic jugs for operation “measure my piss”, one for our bathroom upstairs and one for my chemical toilet downstairs. I also had to get a notebook to put beside the toilet upstairs so that when I measured my urine during the night I could write the time and the amount. It also involved me wearing a watch for the whole three days so that I knew in what hourly gap I could place my latest offering. I guess if you are a “normal” person who visits the toilet to urinate up to seven times a day (link) then it is not too arduous but yes you guessed it I am not normal!!
When I first saw the chart I laughed like a drain – I would have said pissed myself but it didn’t seem appropriate. The boxes in which I was supposed to record the relevant information seemed a little small. I found over the course of three days if I wrote in very tiny writing I could get in my multiple visits in the minuscule space. Nothing like highlighting the fact that your toilet habits aren’t normal than receiving a form to fill in that barely gives you the space to record that fact.
I found out very early on there were certain things that needed to be avoided during this measuring phase for instance wearing anything with toggles or that could dangle down and accidentally find themselves floating in a full jug. Not to give you too much graphic detail (but I am sure this exercise is easier if you possess a penis) for us ladies it involves contortions of which it has been one of the few times I have ever been grateful to have Ehlers Danlos Syndrome. Holding a jug under ones lady parts is difficult enough whilst attempting to go, then bringing the jug back out again without spilling a drop is something I would have paid to see on The Generation Game – now I am revealing my age! There were so many occasions where I nearly spilled the contents of the jug over myself the theme tune from Mission Impossible kept playing in my head.
Thankfully it never happened but I did have an incident where a dog came barging into the bathroom and displayed far too much interest in the contents of the jug. As I batted it away its nose bashed the side of the jug nearly sending its contents flying. It was a nerve-wracking three days. I am relieved (no pun intended) that this is now over.
It did produce some interesting results on average I pee 25 times a day, Drink 6.8 litres and pass around 5.9 litres. Considering I am on salt tablets and fludrocortisone to hold onto fluids and boost my blood pressure I was surprised to find how little fluid I was holding onto. I don’t really know how much I was expecting but to be drinking so much and holding onto so little was a real surprise. I do wonder how much of that fluid is retained as I have been having such horrific night sweats of late that I am having to change my pj’s half way through the night as they are drenched, as are the bed-clothes.
I have always drunk a lot, even as a baby I liked nothing more than guzzling on my bottle which lead to me tripling my birth weight in record time. No one at the time realised it was my constant thirst I was satisfying not hunger. It is only since I received my diagnosis of dysautonomia that we have been able to piece together why I have a constant thirst. It is also one of the symptoms of dysautonomia which I now believe I was having symptoms of throughout my life and it didn’t just suddenly appear in 2007.
My bladder problems surfaced in 1998 after major surgery for the removal of bowel adhesion’s. Twelve hours after the operation I was still unable to pee, I had gone into acute urinary retention and needed a catheter fitted. Not at all uncommon after receiving a general anaesthetic. The nurses at the time told me it was because the surgeons had bruised my bladder during the operation. How true that was I will never know. What I did notice after this hospital stay was that I was unable to hold on when needing to go without leaking. Only a small amount but enough for me to feel self-conscious. In the job I was doing frequent toilet trips were frowned upon so I just had to manage the best I could. Things like Tena pads weren’t as freely available back then when I was 25, so I would rely on pant liners that I changed frequently.
Because of my age I was far too embarrassed to seek help and for the next 15 years I suffered in silence and as you all know if you are a regular reader of this blog the bladder issues have become much worse. I now have problems initiating urination, I have to strain to get my bladder to empty completely and I still leak. In the last twelve months I have been catheterised twice due to going into acute urinary retention. So now it has been decided by the medical professionals that treat me that I need to be taught how to self catheterise.
I didn’t realise how much my frequent toilet trips were impacting my life until I was chatting with my husband about wanting to see the new Star Wars film. He said to me “I would love to take you but you couldn’t sit in the cinema for two hours without needing the loo” and he was right. I can’t watch an hour-long TV programme without getting up for the toilet at least once. At the cinema you can’t pause the film like you can on Sky. This was a bigger problem than I was admitting to myself. It is funny how you adapt behaviours to accommodate your problems without realising, a few years ago I stopped drinking for an hour before leaving the house so I could avoid constant trips to the toilet. When I need to go I can’t hang on because it gets quite painful quite quickly. So a trip to the cinema is definitely out.

I was planning in this post to let you all know how my appointment went however I have been hit by a wall of fatigue and it really deserves a post all of its own!

Bouncing back or not …

Its been over a week since my last adventure (acute urinary retention) and bouncing back I am not.

It seems the cellulitis (x3), the kicking off of my symptoms in February and the latest thing to add to the catalogue of disasters that 2014 has brought, acute urinary retention has depleted any energy reserves I had as back up.

I am back to a state I last saw in early 2007 / 2008, where just getting up and showering is a major achievement. Frustrating doesn’t even seem to cut it. It seems 2014 doesn’t want to allow me any steps forward but is keen to make all the steps I do take are backwards.

I used to bounce back within a week or two from events such as these. I knew bed rest and cutting back on activities would “reset” my system. It seems that function is no longer available. I am sleeping most afternoons and adding that to what I am sleeping at night and its getting on for over 13 hours a day. Something I haven’t done for such a very long time. I know that this means that I am very sick or recovering from being very sick.

Since being catheterised and it subsequently being removed, for over 7 days I was left with reasonably painful bladder spasms that werent really responding to buscopan or opiate painkillers. The only relief I could get was a hot water bottle and to lie down. Only that always kicks my back off especially when you add into the mix that I have been sleeping for 13 hours plus a day. And my electric blanket appears to have died. I didnt think that things could get much worse lol!

Every part of my body is aching, I am struggling to think straight. I have transient moments when I can converse proficiently but the rest of the time I am struggling to follow a conversation or understand most things my husband is trying to talk to me about. Fun it is not.

I am hoping that scaling back on my activities (not that they were vast anyway) and spending more time resting will do the trick. When you have been stable for a few years and then suddenly take a nose dive its scary. Add in that the doctors don’t know why my condition is deteriorating or why its come about in the first place? It makes for a bumpy ride.

I try not to spend too much time navel gazing as it gets me nowhere. My mood is low, which is hardly surprising with so much being thrown at me at the moment. I am not depressed I am reacting in a natural way to the events taking place in my life. I can still laugh, smile and look forward to things in the future. I am still enjoying all the things that I always have. I am just so very sick and tired of being sick and tired at the moment.

I apologise for this being such a “down” post.

Post script:

My blog post was completed towards the end of last week and I am happy to report my mood has lifted. Probably helped by spending the day with a dear friend celebrating her birthday.


Unfortunately on Monday night  (30th June) a mosquito or mosquitos decided to bite me 4 times. You can probably guess what I am going to say next……cellulitis, although it could be Skeeter Syndrome. I have one bite on the back of my left hand, that has made it swell up so much you would think I had broken it. Two further down my left arm that have also ballooned and one on my flank which is now deciding to swell and is 5cm in diameter. I am currently waiting for my gp to ring (its got so frequent now that the surgery staff no longer confirm my telephone number!). So more antibiotics and possibly prednisolone will be thrown into the mix. Its never a dull moment here!

Tuesday morning (left hand)


Tuesday Evening left hand


Tuesday Morning Left Arm


Tuesday Evening Left Arm


I am now on antibiotics for the next seven days and have to have a load of blood tests done next week.