Now you see it...

Visible and invisible conditions. 

I'm grateful my Type 1 diabetes is invisible. Unless I choose to talk about it nobody knows. Yes I've got an insulin pump on my waistband and a CGM attached to me but if I don't tell then nobody is any the wiser That suits me fine. I can't cope with the comments about guaranteed cures I've carelessly overlooked for 42 years, neighbours at the bus stop passing me adverts for healing honey or magic capsules guaranteed to bring my long deceased Beta cells back to life. I'm happier dealing with my diabetes by myself with the help and support of my family and people I share it with. I'm fine with keeping it as invisible as possible. 

Living with a visible long term complication of diabetes has reinforced that decision to me. I live with Charcot foot a devastating, destructive  complication of diabetes that has caused the bones and joints in my feet and ankle to collapse and displace.  Over the past 25 years I've lived with one - sometimes both my legs- in plaster casts or protective boots and need crutches to walk. I can't disguise my leg in a cast, sunglasses and a baseball hat don't touch it and each time I leave the house I can pretty much guarantee I will get at least one comment about my leg. It seems to be fair game for others to joke and pass comment on and it appears that there just has to be some banana skin, 'Carry on Matron' comedy reason for my leg being in a cast. Usually I ignore the comments but sometimes they really do hit a nerve. Recently someone shouted at me to have my leg off and get a new one. Not remotely necessary or funny especially as I have been advised to have a below knee amputation. The person making those comments had absolutely no idea who I am or why my leg is in a cast but still felt justified and entitled to comment. It is my disability and no one has any right to comment or make fun of it (apart from me if I should ever feel the need - which I don't)

Thinking back I have had so many comments over the years - just a throw away 'joke' by someone I don't know. The fact I only get upset when the comments are too real and upsetting speaks volumes for all the other glib, unnecessary words I've had said to me.

"Where's your parrot Long John?"  "Did you enjoy your trip?"  "You must have been really plastered!" "You'll be on the bench on Saturday!"  "You won't be representing us at the Olympics/World Cup/Commonweath Games" etc dependent on the current sporting event. "Serves you right for going skiing". "Did you get the number of the bus before it knocked you down?" " You need to stay off the strong stuff " "Drink more milk that would mend it"  and so it goes on. 

Some people walk along side me and offer to race me "come on Hop-a-long I'll race you to the corner" just what gives any one the right to find my disability their business to poke fun at? 

"We can help you claim for that" - the ambulance chaser firms presume I can claim for a pothole or an uneven pavement accident. I mean just who would I send my claim to for a neuropathic complication of diabetes that destroys joints and bones? I have considered taking them up on the offer just to see how far I get before the who to blame and who do I send the claim to questions halts proceedings. 

I've had a local church group stop me on a few occasions and ask me to accompany them to a service where they guarantee my bones will heal - never mind the fact I haven't actually got an ankle joint to heal just a load of metal pins and plates. 

At the other end of the comments spectrum I have overly concerned people who feel the need to congratulate me and cheer me on just for managing to leave the house "Congratulations, aren't you brave!" and "Aren't you doing well" when I'm just walking to the shop to get some milk. 

I've tried to work out why a broken leg is considered fair game to comment on without any idea what the cause is. On a few occasions I've tried to explain that Charcot foot is a complication of diabetes only to be told that I'm wrong and diabetes doesn't do that to people and I should get a second opinion - as if I haven't sought expert advice on my Charcot foot over the past 25 years!

It is a rare complication thankfully and I don't expect anyone to know about it. Sadly I didn't know about it when it happened to me nor more's the pity did the medic I saw who diagnosed a sprain and said I'd be fine in a week. My leg in a plaster cast does however seem to remain something others feel completely at ease commenting about. Enough is enough,just stop it please. 

Sight threatening Retinopathy

This is my experience of living with sight threatening retinopathy. It has taken me about 30 years post retinopathy diagnosis to start to talk about it and write some things down. I dealt with the physical treatment to save my sight but it changed my life for ever and it has been and continues to be a challenging and very frightening time. 

There wasn't a National diabetes retina screening programme back in 1978 when I was diagnosed aged 12 with Type 1 diabetes, it was established around the early 2000's. I was 16 when I moved from the paediatric diabetes clinic to the adult clinic and that was when I first started being aware that diabetes could cause sight problems. Retina checks were done on an ad hoc basis in the normal diabetes clinic back then, sometimes if the clinic was busy I was told my retinas would be checked next time as I was only young or if there was time in the clinic I had drops put in and a doctor shone a hand held torch in my eyes and checked for potential problems. There wasn't digital photography to allow for any comparison with previous checks and no organised annual screening. As I moved to new towns with my job the random timing of diabetes clinics and retinal checks continued throughout my 20's as I needed to register at new GP surgeries and wait for new referrals to hospital clinics with each move. 

I was working in a new part of the country and studying day release at a London college, as far as I was aware I had no problems with my sight. One morning I got the train into London with an incredibly sore red eye, I couldn't bear light going into my eye so decided that I needed to ask for medical help. I went to a London eye hospital A&E and was diagnosed with iritis - inflammation of the iris which is incredibly painful and dangerous to sight - and was prescribed drops by a Doctor who then asked me "who is dealing with your proliferative retinopathy?" I was completely shocked and said I wasn't aware I had it, he booked me in to an emergency clinic the following day where my battle to save my sight began. Looking back now I am so grateful for that course of events. If I hadn't had iritis and hadn't gone to an eye A&E I doubt I would have sight today. It underlines the vital importance of regular retina screening, I had no symptoms to suggest that anything was wrong with my sight. Thank you to that Doctor and the amazing NHS team in London who saw me so quickly and did everything they could to help me over the following years.

I had maximum laser treatments on both eyes over the next few years with the maximum number of laser burns possible put on my retinas every few weeks and to start with apart from grainy, light sensitive, sore vision I didn't notice too much change in my sight. The rod cells which enable peripheral and night vision were in the areas being lasered to try and protect my central vision and as the treatments and months went by I started to notice I couldn't see at dusk and in the dark, as a passenger in a car at night I couldn't see the pavement, double yellow lines or lane markings. It was incredibly frightening, there were large areas of my peripheral vision missing. Trying to find the correct train home after treatment became increasingly distressing and disorientating until I had to start to use hospital transport there and back. I was told during this time that I could no longer drive and I wouldn't be able to drive again. It paled into insignificance against trying to save some sight. 

One morning I woke with no vision in my left eye, I rubbed my eye thinking something was in it but still nothing just a sea of grey fog and as I stood up blood started to appear inside my eye. It paralysed me with fear. I got to A&E where I was diagnosed with vitreous retinal haemorrhages -fragile abnormal new blood vessels grow in the retina and can easily bleed into the eye. I needed to wait for the blood to clear but as the blood is trapped in the vitreous jelly it can take weeks/months to disperse leaving large dark cobweb shapes obscuring sight. After waiting for the blood to clear with numerous further bleeds I was told I needed a vitrectomy operation where the jelly is removed from inside the eye along with the trapped blood and is replaced by a clear liquid. Sadly treatments such as Anti VEGF injections weren't available at this time and after further operations, lens removal and cryotherapy my left eye was too damaged and my sight couldn't be saved. At that time my right eye started to follow the same progression and I ended up with hardly any sight for approximately 12 months. This period of my life was utterly devastating and I was beyond scared. I lost my driving licence, my job and career, my income, my reason to live where I did, without the help of my family I don't know how I would have got through it. I was trapped inside my head with only a small slit of light at the far edge of my vision. Eventually things settled enough for me to have a vitrectomy in my right eye and the day after when the post op bandage was removed was the best day of my life. I can remember light entering my head and the pattern on my top appearing through blurred sight, white spots on a dark background. It was the most uplifting and amazing moment that has kept me positive and optimistic ongoing. In reality this terrifying period of my life lasted over about 5 years and at times I despaired for seeing again. I couldn't distract myself with something else to take my mind off things, audio books just about kept me sane but there was no escape from the grey swirling mess in front of me. I had a ringside seat and couldn't look the other way.

So 30 years later how are things? Well I'm partially sighted, I can't see through my left eye and I only have central vision in my right eye. All my peripheral vision has gone so I can't see anything at the sides of me, I can't see in low light, dusk or dark and things are washed out in bright light but the sight I do have is the most precious thing. 

Everything I look at is surrounded by a constantly flashing halo of neon green, purple and orange lights, they're SOS signals from my threadbare retinas alerting my brain that they are low on oxygen and nutrients. The lights are so distracting when I'm trying to cross the road or focus on a page and are a seasonal nightmare in December when they seem to flash in sync with the Christmas decorations in town.  My vision is like looking down a tunnel, not a crisp, clearly defined tunnel but one with distorted flickering edges. Nothing is straight as my retina isn't quite flat, lampposts and trees have bends in them and nothing is quite where I think it is as I don't have perspective and misjudge distance. I see steps and kerbs as ramps, using kettles and boiling water are a no go. I walk along the edge of buildings like an undercover detective as I need a straight line to follow else I become dizzy and disorientated in open spaces. Without any peripheral vision at all busy areas are a challenge as I don't see people crossing in front of me until we collide often accompanied by a blunt "Look where you're going" from them to which I usually answer "I wish I could". 

I get the same level of optimistic suggestions to regain my lost sight as I do to cure my Type 1 diabetes. "You don't look partially sighted or diabetic you really can't tell, are you sure? you should get a second opinion" or "Why don't you try contact lenses or varifocals- my optician is really good I'm sure they can help you- then you can start driving again". It doesn't register however often I say it that my retinas are too damaged, it doesn't matter what style glasses frames I put in front of my eyes I haven't got sufficient functioning retina remaining.

Dealing with my diabetes and insulin pump is an ongoing challenge but technology is advancing so quickly with touch screens and smart phone apps that connectivity between devices can overcome some of the issues. For now I have some excellent magnifying equipment from the hospital low vision clinic and multiple pairs of reading glasses I stack until I can focus sufficiently. My main challenge is that insulin is a clear liquid - I really struggle to see clear things- I need to put clear liquid into a clear plastic reservoir whilst avoiding clear air bubbles. I have a system that works most of the time but thank goodness I only need to change my cannula every 3rd day!

 

 Living through sight loss was and still is the most overwhelming fear I deal with. I attend regular retina clinic appointments at the hospital and apart from having a cataract operation in my right eye things are as stable as I can hope for. That doesn't mean I'm not terrified of things going wrong again and I'm scared of non diabetic age related eye problems starting as my right macula is the only bit of functioning retina I have remaining. I have a procession of floaters that drift across my sight and I recognise their shapes but if anything different appears in my sight - usually an eyelash -it sets off absolute panic in my mind. I'm beyond thankful that since all my problems in the late 1980's and early 1990's the National diabetes retina screening programme has been established to monitor and pick up on very early retinal changes and to offer the best care pathway, treatment if needed and reassurance to people living with diabetes. Knowing that things are as stable as possible with your sight is priceless information. The level of sight I have lets me live independently although I know I miss a lot and collide with too many things. I'm beyond grateful to the NHS for helping me through such a devastating time and for the ongoing help to provide me with the best chance to maintain the sight I rely on today. I'll do everything within my capabilities to try to protect and keep the incredibly precious central vision I have. 

Charcot Foot

I'd love to be able to run and jump, I'd love to wear a pair of shop bought shoes. It's not that I don't own shoes but the right shoe always stays brand new, unworn in the cupboard with the labels still attached. So what's the problem? I've got Charcot Foot also called Charcot neuroarthropathy, a devastating, destructive neuropathic complication of diabetes. Symptoms of Charcot Foot include a foot that is warm or hot to the touch, swelling, redness over the affected area and pain. The level of pain experienced may be diminished due to loss of sensation in the foot. If left untreated nerve damage and impaired sensation from peripheral neuropathy can cause the bones in the feet to weaken which can result in inflammation, bone and joint collapse, fractures and dislocation, permanent foot shape deformity and can lead to ulcers and amputation. This is the outline of my feet showing the bony mass projecting from my deformed right foot.

I was diagnosed with Type 1 diabetes (or juvenile onset diabetes as it was called then) as a young girl in 1978. I'm sitting in hospital practicing injecting water into an orange being told I'll need to test my urine for glucose (home blood glucose testing was about 7 years away) and look out for foot complications, eye problems, kidney problems....it's a lot to take in on top of being told I'll have to inject insulin for the rest of my life- I was told there would be a a cure in 10 years but the much awaited 1988 came and went.  I look around the children's ward for clues of what on earth has happened to me and there's a poster of a tightrope walker crossing a valley with words along the lines of  'Diabetics have to do this every day', that image has stayed with me over all the years. I can remember thinking I hate P.E, I'm always the last one picked for the netball team and now I'm going to have to take up gymnastics whilst injecting myself and never eating biscuits again. Could my life get any worse? The importance of balance in all things diabetes hadn't yet dawned on me nor had the permanence of the diagnosis.

It was all so frightening and overwhelming, information was very limited and hard to come by. The British Diabetic Association magazine was my main source of information every month along with a few lines in my Biology 'O' Level text book about insulin being produced in the Islets of Langerhans. I thought the Islets of Langerhans sounded more like an exotic Caribbean holiday destination than a vital cluster of insulin producing cells my own body had turned on and destroyed. I didn't know any one of my age with Type 1 diabetes and felt really isolated with it landing in my life.

The only foot problems I'd ever encountered were a few blisters that had healed quickly, I couldn't imagine what a diabetic foot complication could be beyond what I'd already experienced. That lack of accessible information and knowledge on all things diabetes and complications carried on for me through my teens, through my twenties and on until dial up internet arrived in my home at the end of the 1990's. I could never have imagined the devastating foot complication that side swiped me that day in May 1997. I rapidly developed a very painful, swollen foot out of the blue without any recollection of injuring myself and was sent to A&E by my GP as they suspected a fracture. I had an X Ray which was clear and was diagnosed with a sprain although I said I hadn't hurt myself. I was sent home having been told things would settle down in a week. I didn't make it to a week, 48 hours later I was in agony, my whole foot shape had changed, all my metatarsals had fractured across my midfoot causing a large mass of bone to project along the inner side of my foot, my arch had collapsed and was projecting below the level of my foot called a 'rocker bottom' deformity and some of my toes had dislocated. My whole foot was twisted and broken. It was horrifying to see the physical destruction that had happened in such a short time without any external force or trauma.

Times were very different before home internet without smart phones and tablets, there was no instant advice and help available. There wasn't a designated diabetes podiatry clinic in my area to ask for help. Typing 'hot swollen diabetic foot' into a search engine today returns Charcot Foot as a potential diagnosis at the top of the list with advice to seek urgent medical help. Sadly that wasn't an option when I was seeking help in 1997. That precious window of 48 hours after I'd attended A&E when my foot had been swollen but intact passed me by, perhaps with some protection my bone collapse may have been avoided. I'll never know if that was a chance lost and that makes me sad to this day. I was admitted to hospital and that was the first time I heard the term Charcot Foot.  I stayed in hospital for 3 weeks having scans and waiting for the swelling in my leg to reduce so I could get a non weight bearing cast, a surgeon told me I should consider amputation as neuropathic feet were not operated on but were amputated. I'd gone from being able to walk normally to discussing amputation in the course of one week.

My life in terms of diabetes management in the few years pre Charcot Foot had been very  challenging. I'd battled with a complex Type 1 diabetes eating disorder now called diabulimia -it didn't have a name back in the 1990's- and the issues I'd faced during that period caused serious complications and damage.  I lost the sight in both my eyes for about 1 year from sight threatening retinopathy and had only just regained central vision in my right eye after multiple surgeries when Charcot foot happened. I've lived with that level of sight loss ever since.

I set out on my life on crutches with my leg in a non weight bearing cast.  I soon learned to think long term with Charcot Foot, the follow up hospital appointments were usually 3 months apart. At the beginning I optimistically took a shoe to each appointment in the hope I'd be home without a cast but that didn't happen. Over the following years every time I tried to come out of a cast I suffered further fractures and finally my ankle joint collapsed completely with more bone destruction. I had a number of pressure ulcers from putting weight through the wrong areas of my feet - some that required skin grafts to heal. During this time my other foot started to fracture with metatarsal and ankle fractures that took months and surgery to heal. One broken foot is difficult, living with both feet in casts really did stop me in my tracks and made me very fearful for the future.



Charcot Foot is a devastating, debilitating, unpredictable  complication to live with. It's consequences are terrifying and puts my feet at very high risk of ulcers and amputation. The mass of disorganised bones in my foot- although held by surgery- mean I put pressure through the back of my heel increasing the risk of tissue breakdown. The position of my foot is fixed so I can't change where I land.  I've had multiple surgeries to try and hold my ankle and foot together but my bone chemistry isn't working efficiently after 40+ years of Type 1 diabetes and despite trying various drugs I've failed to grow sufficient new bone around the metal to form a solid, stable union. I'm in a cast as my foot has a fracture and is generally too painful without support, I've been told I should have a below knee amputation . For the time being I've decided to keep going as I am as thankfully my circulation and skin are reasonable and I know I can manage with my limitations.

23 years after my initial swollen foot I walk with crutches on a deformed foot and no ankle joint. It scares me every day as I check for skin damage and any further bone collapse. Charcot Foot is quite a rare complication although with the increased prevalence of diabetes in the world cases of it are increasing. I haven't seen much written about it, I've only met a few people with it and that was unsurprisingly at a Charcot Foot clinic. People who ask what is wrong with my foot cannot believe that a complication of diabetes could possibly cause bones to fracture. I had never heard of it until it happened to me and only recently have I been able to talk or write about what  happened. I dealt with the physical problems because I had to but the guilt and fear it has caused me remained shut away. I wanted to write this to increase awareness of Charcot Foot just in case someone else should ever find themselves in the same or similar situation to me.