The King and I?

So some good news. ‘At last’- I hear you say. Indeed! I went all the way to London a week or so ago. Had my appointment at the King edward hospital, for the veterans pain management clinic. You have to be assessed before being accepted. It was a long day. 4 hours of driving each way. I actually drove for an hour and a half, which i’m really happy about as i am still a ‘new driver’.

The clinic was really impressive. I had proper conformation that I have crps. They were shocked that I have not yet, despite 3 referals; seen the pain team where I am. I explained to them my history with them. With the doctor accusing me of ‘self mutliation’ because I elected for an amputation. Then the same doctor being booked to place a block in my leg to try to get my pain under control, and thus reducing the possability of complications. So as you may know, I was admitted 4 days prior to my amputation for this procedure to take place. She was given the dates. Suprise suprise, she diddnt show up, despite my consultant ringing her. Now my crps is back. Did her what I would call, neglegent neglectful behaviour have an influence on my crps returning? Maybe? The doctors in london diddnt conform or deny this is a possability.

So needless to say though, that they said i should have no involvement with the pain team at Exeter. So instead they have refered me to Bristol or london. I have chosen Bristol as its closer. They have also accepted me onto the pain management programme, which takes place in London in June. Fingers crossed that something may help. The pain seems to be getting worse every day, but I am ever hopeful that something will come along which will be of benefit.

So a word of advice that I can give to anyone. If you see a doctor or any health professional that makes you feel upset or like a pile of rubbish, firstly you can complain, and secondly id request another professional. They may just be having a bad day of course, but I think I can confidently sat that in my 14 years being a registered nurse, I never took my mood out on a patient. The patients were normally the best part of my day, and often a welcome distraction from working life in the nhs, which is probably the least compassionate place on the planet to work, when it comes to caring for its staff! But thats another story!

So for now, im plodding along. I havnt yet gotten my hand fixed, and so cant train. But I am looking foreard to the day when I can. I am getting to the gym and still working with weights, so that when I can return to full function, I will not have lost all muscle mass, apart from that in my leg, which now looks like a twig! Ha ha!.

Stumpey trying local anaesthetic plasters….diddnt work, but it was worth a go 😊
Little Lily is growing up so fast ❤

I passed….

So as you may remember, last Friday was the day I had been waiting for…. the 2nd attempt at my driving test. I was extremely nervous, and not very confident; but I passed. I was so extatic. The poor examiner…I ended up bursting into tears in the driver seat, when he told me that I had passed! It means so much. I can have a little independance again. We chose our car specifically so that I can get my wheelchair in and out of the car by myself.

The past week has been a definate learning curve. Driving without the reassurance of the lovely Darren at second 2 none driving school, is a little scary. But ive managed it. Ive taken myself to the hospital for my CRPS appointment, and to physio, and to college. Its amazing. Once more, my poor wife can now; finally rest and stay at work, rather than having to clock out every day to take me here, there and everywhere. So a welcome break for both of us 😍

So, as for the rest of the week. I finally had my pip assessment on Wednesday, after waiting over 9 months to have my face to face appointment. For those of you who dont know, you are supposed to be seen within 6 weeks!! I have had my appointment changed 4 times. Then at the beginning of December, myself and the amazing Steve from BLESMA, (who has helped me so much); went to what was going to be my face to face, and the assessor left the building before even seeing me. She basically walked past us and went home! Then because of the mess ups, I was assured that I was going to be seen within 2 weeks of that date (4th December), and I was finally seen yesterday….and then It was delayed by 2 and a half hours!! But I was seen…. the lady was very lovely too. She was very kind and had actually heard of CRPS, which is amazing. Almost nobody has heard of it.

Todays appointment was not too helpful. Now we are trying a bit of tape on my stump…. I understand the premis behind the confusion which my pain receptors are in, and the tape may confuse them….but ive been waiting for 9 months for treatment…and so far we have tried local anaesthetic plasters…which made it worse, and now tape! I still have not seen a Doctor at the pain team, or a specialist of any sort. I have learnt that there are a few treatments which I should have had early on, which may have helped; but I diddnt recieve. An all too familiar story. The same as the pain Doctor who was supposed to arrive on the ward prior to my amputation, to put in a block and try to control my pain prior to surgery, and she diddnt show up; despite being reminded, and my consultant telling her she should be there. This was the same Doctor who accused me of, and I quote ‘self mutilation’, because I elected to have my amputation due to the crps. Those of you who have it, will know why I made this decision.

Anyway, I would also like to thank the wonderful lady who gave a very generous donation to my Just Giving page, where I am raising funds for my freewheel and eventually Osseointegration. This lady knows who she is, and gives me so much support. She is absolutely amazing and completely restores my hope for humanity; showing that there really are some amazing people out there. Thankyou so so much ❤ I have had a few requests to share my page, so I have put a link below.

https://www.justgiving.com/crowdfunding/lexialyx-chambers?utm_term=z29BQwkD5

For those of you who have CRPS, I learnt something interesting today. Aparently what Ive been doing for months….applying heat packs to my stump that is effected; has proven to help lots of people with CRPS. I have 3 of them, and spend alot of time with them on my stump. I wish I could find one which would last more than 5 minutes though!🤣. Also, I have been accepted for a clinical trial on CRPS, so will be winging my way to London in a couple of weeks for an assessment. On the same day I have my assessment for the veterans pain clinic in London, where they offer a residential course with CBT and other coping mechanisms. This I am so greatful for. Ive heard great things about the king edwars hospital, and am looking forward to hearing all about it. Hopefully it will help.

I do hope that all of you are having a good January and are sticking to those new years resolutions 🤣🤞. I have to say, that I made a couple, well, they are more like goals; so watch this space as I hope to fulfill every one of them. Lets hope that this year just gets better and better…..

Happy New Year One & All….

We had a quiet Christmas. Still mourning the loss of our little boy. My little therapy. My winkeypoo. All the while, welcoming our new little lily. She is just a joy. So adorable. On the nights that I have to have sleeping tablets in order to get some hours of sleep, she follows me into the bedroom and snuggles up either beside or on me, just as winkey did. I think there is some of him in there. She has alot of the same manorisms which he had. We were doing quite well, or so I thaught; until that box arrived, signifying his return home forever. Just a little wooden box with his name on top. Since then, not a day has passed where I have not broken down in tears. Its strange that after all we have been through this year, a cruel twist of fate would tear our hearts open beyond belief and top off the year in the most awful and cruel way.

So as we trott forward to start a new year, I am ever hopeful of a better time. My CRPS has unfortunately reached new and unexpected hights of pain. But I am plodding along. I have my spectacular wheelchair. I am awaiting an appointment with a plastic surgeon and then as soon as my right hand is fixed, I can commense training again. Until then it is my intention to do what I can. I have had to put the date back for my event to 2021. There was no choice in the matter. I had to wait 8 months for a suitable wheelchair, and by then a great deal of damage was done to my hand and shoulders. I am still awaiting an appointment with one of the Pain doctors, for some treatment for my CRPS. Sadly the window of opportunity where treatment has proven to be sometimes effective, lapsed a long time ago.

So where to now? Well, I am currently fundraising for a free wheel, which is an attachment for the front of my wheelchair that can mean I can go more places on my own safely. Exeter is extremely hilly, with lots of cobbles where I live, and not very good pavement access for disabled. I have recieved a very generous donation form a wonderful lady from Canada (I will not name names until given permission, but she knows who she is). Also, I am looking into Osseointegration as an option for the future. The time which I can wear a prosthetic is getting shorter, and I can now only wear my leg for a few minutes at a time, and not at all without considerable discomfort and using crutches or a stick. It is such an awesome leg. I do hope we can come up with a way to wear it for longer. At the moment I am trying mirror therapy, with sadly no positive resutls as yet. But I will persevere. If all else fails…..then Osseo. That is if we can raise the £80’000 for the surgery!! Or win the lottery i the mean time!

Lovely little lily sitting in my leg!

So into 2020. I remain hopeful. Hopeful of a better year than last. Hopeful that we can sort something to help with the pain. Hopeful for passing my driving test on the 10th of January. Hopeful that my hand will be fixed so I can commense training. Hopeful that our boy Boe will have a healthy and happy year. Hopeful that my little lily will be healthy and Boe will get along with her ok (he is doing amazingly so far). I have my exams in may, and so i am also hopeful that I pass them and get good grades. I am having to re-evaluate my future, when it comes to working. At the moment I cannot return to work as a Nurse. The main reasons being my needing to use my wheelchair most of the time, and the unpredictabiity of my CRPS flares. So I am looking into options. I am loving English.

I believe that everything; even the terrable things happen for a reason. It is sometimes hard to know what the reasons are, but they usually come to light. So there must be a reason for last year. So onwards and upwards into this year. We will venture into in with positivity and hope.

Bunk beds….Boe with Lily on Christmas Day
Stumpey looking lovely with local anaesthetic plasters!!

Happy New year to everybody. I hope that this year brings all of you good health and happiness. ❤

The sad, sad day; week, month……

My Baby Boy, Winkeypoo; loving my new chair ❤

So, it has beena few weeks again. I did the stupidest thing….when I came down with shingles and renal colic, and then failed my driving test; I stupidly said those idiotic 5 words, that one should never utter amidst a time like this (‘nothing else can go wrong’). Then of course, as im sure you know; and have experienced this yourself; it did. In spectacular, heartbreaking fashion.

You all know my Winkeypoo by now. The light of my life. My friend, the cause of my smile, my midnight cuddles when I cant sleep, my therapy. Well. On the 27th of November, he wasnt eating again. He has had alot of illness, and eating is always our guague of how he is. So not eating, is a big deal. So we took him to his favourite vet, Lily. She is amazing with him, and has saved his life so many times. She treats him as her own, and loves him almost as much as we do. She took him in for blood tests. We sat and waited as always. Not our 1st rodeo here. Then the door opened, and those fateful words. ‘Winkeys mummies’. Normally this was in an upbeat tone, but from the lower tone, i knew. Then she said ‘he is still asleep’. Then we really knew. He was laying on his side, with a lovely nurse holding an oxygen mask to his face. Then the bomb. His bloods were catastrophic. He had no white cells, his blood was basically like water. He had leukaemia. We all have no clue how he was still alive from how he was. That morning he was purring, and we had cuddles. He kept looking at me in such a way that i knew, in my heart i knew, but i did everything i could to ignore it. It couldnt be happening. Not to my baby. I was not ready. 13 years is nothing. We need more time. But he had no more to give.

We all, Shannon, Vet Lily, and I held a paw and kissed him goodbuy. We got time to tell him how much we love him, and thank him for being so wonderful. Then he was sent to sleep. We held him all 3 if us and cried, and talked about how wonderful he was. I have never in all of my life felt heartbreak like this. It diddnt seem real. Still doesnt. We took his carrier home, but with no Winkey in it. I couldnt even take it out of the car.

Well the next few days, we were barely at home. Couldnt face being there. We made sure our other baby Boe, had lots of cuddles and kisses, but thaught he would be ok, out of all of us. They never got on. Used to savage each other at least once a week. But in that last week, they cuddled. I knew then that something was wrong. Our Boe then went through such intense grief. He diddnt eat for days. We took him to our Lily and he had tests, but all came back fine. He was missing our boy as much as us.

During that few days, we went to Zizzis for lunch, and were sat sobbing into our food, when in walked Frank Skinner, who sat on the table next to me. Ordinarily we would have been a bit star struck, but we just tried to hide our faces. I think even the waitress was scared to come over!

It was about this time where we made a somewhat rash decision. Grief is never a good time for rationality. I saw a little face on my phone, and I couldnt stop looking at it. I showed my wife and she was transfixed also. A couple of days later we drove the 4 hour journey to London to meet, who is now our little Lily. Named in honour of our lovely vet and friend, who was so amazing with our boy, and there til the very end. She went above and beyond any vet. I really cant thank her enough.

Baby Lily

This is our little Lily. Our healing therapy for us and Boe. He is a little unsure, but is so good with her. He has become really cuddley, which is amazing. We were told she was 8 weeks old when we collected her. She was very small. We took Lily to meet Lily, and found out she was only 6 weeks old. Im so glad now that we drove to meet her, and bring her home with us. I knew we would love and cherish her in the was she deserves, in a way all animals deserve. Lily said that as first she diddnt understand how we could get another so soon. Believe me, we were as suprised as anyone. We always said we wouldnt, but it was like fate. We diddnt see it until she pointed it out, but little Lily looks just like Winkeypoo. She has some of his personality too. She is definately her own little girl, but I like to think that some of him is in there.

We miss him terrably, and he will never be replaced. He was my baby boy and I loved him more than I thaught possable to love anyone or anything. He was and will always be our heart and soul.

And now…..we adore and love our Boe, and now our little Lily. She has baught us home again, and baught us all together.

This is Winkeypoo at the top, Lily o the bottom left and Boe on the bottom right.

I know this post is just about my boy, but he is a huge part of my life, and has definately been part of my healing and recovery. ❤

Hell week!!!😢

Last week was indeed the week from hell. As you may have read I was doing my condensed course in driving. So, on the Saturday before I started having back pain in the centre of my back, both sides ironically where your kidneys are positioned. This was then joined by pain under my ribs at the front. Trying to ignore it, I started my driving lessons. My instructor ‘Darren’ with second 2 none driving school; was absolutley amazing. He was very supportive and had a great way of teaching and putting someone at ease. On my 1st lesson I drove for 5 hours. He said that he was really impressed and even felt the need to ask ‘are you sure you havnt done this before?’. I got my parking in mainly 1st time. All was well. On the second day, i hadnt slept much due to the increasing pain in my back and abdomen, but again I persevered. It was the early hours of Wednesday that I was awoken in agony. I ended up waking my wife to ask her to drive my to hospital at 5am. After the usual epic wait for triage, i was sent strate to majors; put in a gown; and given a load of morphine. Anyway, a very long day, with a ton of tests; including a very unpleasant internal gynocological ultrasound (dont ask?), revealed Renal Colic. I was aloud home with alot of meds.

Determined to carry on with driving, i made it to my lesson on Thursday. We had quite alot to do with a whole day lost. But my lovely instructor reasured me that he was not worried, as I was doing so well. I have to say at this point, that I do not like duel carrageway driving. Its terrifying! But I did loads of it. Still in alot of pain on Thursday, my back started to itch, as did my abdomen. A rash appeared, which was extremely sore to touch and spread around the left side of my body. Yep, I had also developed Shingles. So I didnt sleep at all on Thursday. Not ideal for my driving test on Friday. Needless to say, that I did not pass. I was in so much pain and so exhausted, but I still wanted to try. The examiner asked me to head towards Plymouth on the duel carraigeway, and apparently I stayed in a lane too long. He siad that I diddnt mirror, signal, manouvour enough. I remember doing it everytime, but I think that I diddnt make it obvious. So all i all; not good. I have rebooked my test. My new date is the 20th of December. Lots of time for more practice.

So i now have new medication for my Shingles as well. My wife picked up my prescription today from the pharmacy, in a carrier bag. There was alot! I havnt been able to move much at all. Absolute exhaustion and pain prevented this.

Im starting to think that I must have done something really terrable in a previous life. I seem to be going from one health problem to another, adding pain upon pain. Or maybe its because im a very lucky, very fortunate person to have found my soul mate, my wonderful life; that the balance is agonising pain?

Either way, I declare that it is not fare. I really just need something to go well. At least the extra illnesses to dissipate, and maybe even a bit of intervention for the ongoing ones, would be amazing. Im still awaiting a specialist for my crps. Still waiting for everything basically!

Who knows? Maybe 2020 will be amazing. I do hope so. I like to think that I dont let stuff get to me, but it can be tricky at times. Especially what things do not go well at all. I think the trick is to stay as positive as possible. Not easy. But positivity is the better option. The only way from down, it up. 😄

Fancy that! A date at last.

A letter arrived through the door last week. An appointment. Not unusual at all, as I have an abundance of these. But this one baught a sigh of relief. It stated that on the 21st of November I will be finally collecting my newwheelchair. This month, things may finally start to turn around. I have my driving lessons through the week of the 11th of November to the 15th, when I have my driving test. 6 hours a day of driving. Its going to be quite a test of endurance for me, as ive been off work for quite some time. Then my chair 10 days later. Amazing.

So how is the new leg? Its amazing. It looks so much better than my last. It is much smaller so my trousers fit alot better. I have been visiting the tailors and sewing alot myself, to fit 20 inch zips into the inside seam of my trousers, so that I can remove my leg when I need to; without dropping my trousers! Its such a simple fix, and yet so life changing. I love my clothes. Ask my wife! She dispares everytime the postman arrives! “Been shopping again Lex?” She normally says! But to be fair, I am lucky. I hit the jackpot with my wife. She never minds me spending anything. She knows that im an avid bargain hunter, and as we are almost the same size; we get to share clothes!

So back to the leg. It is amazing. But unfortunately I cant wear it much at all. My pain has gotten much worse. I have now developed the all too familiar aldonia, which is where your skin hurts to touch. I had this periodically before my amputation. Mainly with heavier touch or in the bath, but now it is with most things. Also, my skin has gotten extremely baggy, as I am shrinking really fast. So my ‘baggy boob’, as my wife calls it; is now a pendulous baggy boob! So the skin is rubbing on itself. My Fibula, which is the bone next to the Tibia (bones of the lower leg) is rubbing on my prosthetic also. I have another appointment with my prosthetist on the 20th of November. I think this problem is just going to get worse; as is the nature of crps. I still have no word about an appointment to see a specialist. But I remain ever hopeful.

Flo 2.0

Training is still much the same. I can work hard in the gym, but wont be able to commense proper chair work until I recieve my new chair, and get my hand fixed. I also need my shoulders looking at to see if there is any lasting damage. Lets hope not.

Still, there is alot to look forward to. I am causiously optimistic about my future. I am a realist and believe that you can change so much, but you have to accept those things which you cannot change. I have crps again, and that will not just dissapear. My choices are simple. Hope that soon I get to see a specialist and maybe try some treatment. Try this spinal stimulator, although im yet to read any positive results with a crps patient. If all else fails, and I can raise the £50’000 needed; then I want to try osseointegration. There is a lovely lady in America who has had it, and has crps, but she will be able to walk despite it. Failing that, its trying an above knee. Thats something I really do not want to do unless absolutely necessary. But I cannot give up and just accept that this is the way things are. I had a few weeks where pain was less, as if to tease me into a false sence of security; and it was amazing.

Stumpey staying warm!

Oddities of amputees’

So, in this journey of my new normal, I am finding an ever increasing amount of wierd and wonderful (if you can call it that) attempts to make a disabled persons life easier! That coupled with the constant battle of the able bodied insisting upon using the only disabled toilet as their personal poo toilet! So in the spirit of sharing, I thaught id do just that.

Firstly I may have mentioned before that whilst I cannot work in my profession as a registered nurse, I am topping up my GCSE’s. Also, because I love to learn, and kind of go a bit stir crazy if I cant! So at my college there are a few funny attempts to make my life a little better. The first being the disabled stair lift to get down to the costa cafe, and then the same to get to one of the only disable friendly toilets.

Firstly the lift. I have shown a photo below, as it has to be seen to be believed! In order to get on the lift at the top of the stairs you have to position yourself on the edge of the steps, and then lean forward; hope to god that you dont topple out of the chair; then grab the heavy leaver, and pull down the platform to get on the lift. Now assuming you have arms like a power lifter, then you would still struggle with this. So firstly thats a problem. Then once your on the lift. Your stuck, unless you can miraculously shimmy down to the bottom of the stairs to press the button that operates the lift! Yep you read right, the button that operates the lift is at the bottom of the stairs! Then if you manage to grab some poor person, who lets face it, probably has better things to do with their time, then it takes bout 5 mins to travel down just a few steps. After which, in order to go to the toilet, you would have to repeat the pricess again. So its fare to assume that one task could take half the morning. I get to college at 7am, which is the only time my wife can drop me off. There is no one else there at that time. Not until at least half 8. Lets face it, who would want to be unless necessary.

Now, assuming that all of these things happened, and you make it to the toilet, then you reach another hurdle. Each disabled toilet has male toilets and female toilets either side; you can guarentee that someone is either camped out in there, or have just left; pleasantly leaving behing the mornings emination. Why, oh why, do people insist on using the disabled toilet as their personal poo toilet? There are plenty of others which they can use, and only a couple which I can, and yet i have to either que or risk the activation of my gag reflex!

As you can see, this is the lift folded, and the button to activate it on the left!
The 1st lift. The other is exactly the same!

So my challenges seem to come every day. Things that I never thaught id face. I do wonder what smart engineer thaught of putting in a disabled lift, with a button you cant reach! The college is very conscientious towards me as im only one of 2 wheelchair users in the college. So you would think that I wouldnt have any problems using the loo! I will be asking if they would consider making one of the toilets a radar key entry. We only get a 15 minute break in the morning and I never have time to wait for and get into the toilet. When you use a chair, or a prosthetic for that matter, its a nightmare to get anywhere fast! This way if there are any other disabled, non wheelchair users then they can use the bathroom as well.

So my top tip of the day would be, pee before you leave home. Have a radar key, which you can get from your local council, and maybe take a mask soaked in perfume, so that you dont have to smell the previous toilet occupent!