Since I was 25 (I'm now 52) I had been getting pneumonia at least 2-3 times a year, and as I got older that frequency escalated to almost all the time.
2004 - 39 Years old. I had another bout of pneumonia and felt very unwell as it would knock me out for at least a month. In May 2004 I had a really itchy spot on the back of my neck which I couldn't scratch enough. I was scratching it one night and suddenly had this unbelievably painful feeling shoot all the way down that side of my neck and back, to the point where I almost fainted. I thought I'd been bitten by an insect like a spider. Then it went away a few minutes later.
2005 - New Year of 2005 I had a vomiting attack for 5 days. This was very common for me as all the way through my 20's and onwards I had always had trouble keeping certain foods down. However these attacks had escalated although I just thought that was normal.
29.01.2005 I went and had my first ever pneumonia vaccination as I thought perhaps it was time to try that, and that's when the fun and games began!
Within a couple of weeks of having the vaccination things started to change. I went to help Mum and Dad one day in their garden and remember telling Mum that my big toe was numb. So the next day I booked in to see the chiropractor thinking I had a pinched nerve. I couldn't get in to see him for 2 weeks. By the time I got to see him I had the most painful leg spasms/contractions in 1 leg and burning sensation in the other le. The only way I can explain that pain is to imagine you have a red hot poker and you are sticking it in your leg from the bottom of your foot all the way to the base of your spine. This occurred every 4 minutes, 24 hours a day, 7 days a week. And my legs had gone numb from my waist down. I could still walk and had normal muscle function. It was unbearable, however I just needed to find out what was going on. The Chiropractor suggested that I see a doctor as I couldn't even get on his couch by then. My speech had evolved to "OOhh, ouch, oohh, ouch".
I started the long journey of seeing every specialist in town to try to find out what was suddenly wrong with me. My then GP referred me to a back specialist who said I had a small tear in L 4/5 and 2 slightly bulging discs. He recommended a back operation which I declined.
Late May 2005 I was diagnosed with "shingles" as I had that painful, shooting burning feeling across my midline similar to the "bite" on my neck. My GP then referred me to a Neurologist as I still had the crazy "Oohh, aahh" going on with my legs and now these "shingles" type symptoms. She admitted me to hospital immediately so that they could run a extensive tests on me. I was there for 10 days and all that was diagnosed was an auto-immune disease. She sent me home with so many drugs to help with the pain and spasms. When I look back I am always surprised that I could function let alone walk and even wake up!
27.06.2005 - I was referred to a lung physician who admitted me to hospital for a lung biopsy because of all the pneumonia episodes. They discovered that I had a rare pneumonia called "Exogenous Lipoid Pneumonia". Very common in people who work with wood and use oil to varnish products etc. They realized it was from all the vomiting that when I did so, some of the oils would slip into my lungs. The recommendation was to remove a large portion of one lung as that's where it occurred frequently and was scarred. I decided not to go ahead with it.
Early August 2005 (age 40) a specialist prescribed an infused drug called Prednisolone which is a strong steroid and just reduces inflammation in the Central Nervous System. 01.10.2005 I returned to work as there had been a gradual improvement, I had been off work for 4 months or so. I still had terrible leg spasms and that burning hot poker feeling in my legs, as well as crazy arm spasms in 1 arm. The arm would contract and pull my hand up towards my shoulder. The drugs seemed to make it tolerable to work, and I can't believe I drove, worked and managed a full time team of 16 people at the time! By mid December my legs were numb again and I had developed itchy spots on my legs, had problems with my bladder in going to the toilet, and my walking was affected. I had a MRI and it showed I had a lesion on T6. (A lesion is when the Myelin sheath - the coating that surrounds the nerves, wasn't there and the nerve in the T6 area was exposed. Hence sending strange signals to my brain and body parts that run off that nerve as the myelin sheath is missing as the nerve is damaged). I had 3 lots of 1000mg of the Prednisolone given to me over a 3 day period to help reduce the inflammation in my spinal cord.
2006 - My legs from the waist down to my toes were still numb until mid July 2006. I went to see every top specialist there was. I went to a holistic specialist who claimed he had cured Rupert Murdoch of prostate cancer and had some good ideas. I went to a chap thinking a might have an autoimmune disease called Lupus. He ruled that out. Then in June is saw a Neurologist who specializes in Multiple Sclerosis and he ruled that out. (He is my current Neurologist Dr. John King. That story to come later). My condition starts to improve although I still have numb spots on my left torso and I get pneumonia again.
By August 2006 the numbness in my legs returns and the old symptoms start to reappear.
By 13.09.2006 I start vomiting again and again whilst having anti vomiting injections all the way through until 22.09.2006. I'm referred to the most wonderful lung specialist and kind, sweet person Dr. Sutherland. I am so ill as I've been vomiting for 9 days straight and feel shocking, that when I arrive at his rooms I have to lie on the floor in the waiting room. When he came out to call me in he took one look at me and admitted me to hospital immediately. By then I also had - Pneumonia, vomiting every 15 minutes, hiccoughing nonstop 24 hours a day, heartburn, it was very painful for my left eye to look left and my eye socket was unbearably painful. I had spasms in my left arm, neurological pain in my right leg, right arm, right buttock, right breast, and right index and middle finger. You could not touch me. As well as an itchy right thigh, and an incredible feeling of inner coldness. I had blotchy skin on my face and was so weak I needed a chair to sit on, I was unable to stand. My right lower leg had a feeling that I can only describe as being severely sun burnt, as well as severe exhaustion, extreme restlessness, anxious about how ill I was and very dry skin where you could see the nerve pathway when I had those terrible burning/itchy attacks. What a mess I was in!
The vomiting continued despite all the drips and medication the doctors gave me and I still had a "Lupus" face, meaning it was red and blotchy all the time. A classic symptom of Lupus. One of the Gastrointestinal specialists decided to do a gastroscopy to find out why I was still vomiting. The results indicated that my Esophagus was ulcerated. No surprise there as I'd had been so sick! My veins are very fine in my arms and hands, and always shrink away when they know a needle is coming anywhere near them, so the specialists decided to put a picc line in. This is a fine flexible tube that is inserted in your upper body from the arm to a peripheral vein near your heart. It's about 1 foot long. This means that when they need to take blood or give you liquid drugs, they can use this instead of constantly looking for a vein. By the end of September the vomiting seemed to be under control, however by 01.10.2006 it started to misbehave again. I had numerous MRI's and tests (try that whilst not vomiting) and by 03.10.2006 the MRI showed that I had lesions on my brain as well as on my spinal cord. I noticed one day that my arm where the picc line was, was getting sore and my arm was swelling. I mentioned it to my lung specialist and they did blood tests. I had so many specialists working with each other that I thought let's add another to the list. So off I went to see an eye chap about my sore left eye. He ran numerous tests a few like space invader games for my eyes, and diagnosed me as having Optic Neuritis. This is when the Optic nerve behind the eye becomes inflamed hence the pain I was feeling. By then I had actually lost my eyesight in the 2 bottom quadrants of my eye. I remember when I came back from that appointment there were half a dozen specialists in my room and a few nurses looking very serious. The blood results had come back and I had a very serious infection that they thought was Golden Staph at first but something just as bad called MRSN. That picc line came out immediately and what I call the "draino" antibiotics started immediately for about 8 hours a day.
05.10.2006 - Shortly after that my Neurologist came in to see me and noticed that I had 2 very visible large clots around my neck area. As it turns out this was from the picc line!! Not to mention that my arm was now the size of Popeye's arm compared to the other one. I was whisked off immediately (again) for an ultrasound which showed that the thrombosis (clots) went from just near my throat all the way down my arm!! Bang I was on to another drug called Warfarin to clear that and make sure it didn't travel anywhere near my heart or brain. I had another test done for the vomiting which was fascinating. They gave me a small bowl of scrambled eggs to eat, and then did a scan of my stomach every hour over a 6 hour period. That food hadn't moved anywhere, in other words my stomach hadn't started the process of digestion. I was diagnosed with a disease called Gastro-paresis and put onto a very strict diet of no fibre, no red meat and more fluids. I was in hospital for 3 weeks and I have to say writing this and remembering all of this it seems as though so much happened in that 3 week period. The morning on my discharge my Neurologist came to see me and I told I had some spasms reappearing in my leg so she prescribed some drugs for me. She had also thought that it might be Multiple Sclerosis and had referred me to one of the best Neurologist in the country. That appointment wasn't for 2 weeks. I was discharged on the 14.10.2006 and went to stay with my parents so that I could recover as I was very weak and exhausted.
This is where the fun really began! Whilst at my parents between 14.10.2006 - 3.10.2006 I deteriorated at a rapid rate. These were my symptoms -
- My left eye had been very painful and loss of vision for 4 months,
- Severe spasms in my back on both sides,
- Spasms all the way down my left side from my fingers to my toes with severe burning at the same time. When the burning would dissipate and the spasms eased, the muscles would be very tense.
- I couldn't lift my left arm as that would trigger severe spasms immediately.
- My left arm and leg had lost a lot of strength which made walking very difficult.
- On my right side of my body, my hand, arm and back would spasm and my hand and arm would be pulled up as if it was curling up but involuntary. My right lower leg was starting to contract as well.
- My torso felt as though I had a very tight corset around it. This is called "banding" which is a symptom of the NMO disease.
- Both my hands and hands had pins and needles.
- My lower half of my body was still numb from my waist down, and had been since 2005.
- My entire body would tingle when my body had spasm attacks.
- My skin was also affected - my face, scalp and under my breasts was to sensitive to touch.
- I had those weird "shingles" attacks from my neck to my just under my jaw bone. These would last for long but as mentioned much earlier when I thought I had a spider bite on my neck, I would almost pass out with the pain. You could actually see the redness on the skin and follow the nerve paths and see where they had gone nuts. (I'll attach a few photos at the end of the article). The only way to recover was mental toughness, severe screaming and to put ice cold compresses on the area until it had settled. This would take hours.
- The tissue behind both my ears felt "puffy".
I remember so clearly disintegrating at such a rapid rate in that period of time. My parents have a family room with bookshelves on 2 of the walls. I'd spend most of my days just sitting there watching TV, sleeping and chatting to my folks, and of course sleeping with the dogs. However when I stood up I will never forget the burning pain that shot through my body, especially my legs and buttocks. I could only walk less than a metre and I would have to aim for the bookshelves so that I could hang onto something and scream in agony.
My appointment to see the MS specialist was coming up soon and on the 31.10.2006 I said to my Mum that she needed to call him and tell him he had to admit me immediately. She did so and got his PA and told her that I could no longer look after myself as I couldn't walk up and down the stairs. I couldn't shower myself or dress or function, and the pain was unbearable. I'll never forget the look on my parents faces when I screamed. His PA spoke to him and advised Mum to bring me in to the hospital. With great difficulty she dressed me as well as she could considering my symptoms. It took half an hour to get me down the stairs and then another hour or so to get me into the car. Any movement caused me unbearable pain and spasms. We pulled up at the hospital and Mum ran in to get a wheelchair. This is a funny moment, I know but there was a nurse standing close by who had finished her night shift. The only vocabulary I had at the time was "Ooohh, aaahhh, ooohh, aaaah" and probably some other choice words! She was so kind that she came over to see if she could help. I think from memory she helped Mum get me into the wheelchair. I was admitted and taken to a ward where people were recovering from surgery as my bed wasn't ready yet. I screamed and screamed, there was no way I could keep that in. Eventually I was put into a private room right in the corner of the ward. That was very funny as the entire staff knew me by then because of the screaming! It took 2 days for the Neurologist to find a drug that would help settle all of the symptoms, and that was Tegretol. I also had Valium, Baclofen and Endep. I was exhausted from fighting this war with my body for 2 weeks that all I did was sleep. I finally had some peace. Sadly enough my other eye then started to lose its vision which was clearly what we call an Optic Neuritis attack.
There is a funny code between Neurologists and when you are being looked after one and find another you'd like to treat you, they are very resistant and won't switch. So every time my Neurologist Dr. John King came to check on me, because I was so drugged and exhausted I would be sleeping. I wouldn't hear him saying hello so he'd open my eyelid of one eye and see if that would wake me up. I would wake and all I would say was "Are you my Neurologist yet"? He'd say "No I'll think about it", so I'd go back to sleep. This went on for a few days until he said "Yes" and diagnosed me as having Multiple Sclerosis. I started chemotherapy immediately, a drug called Methotrexate. This is used in severe cases on MS such as mine. My drugs were reduced and I started to walk around the hospital with a walking frame and the Physiotherapist.
On 14.11.2006 I went off to a rehabilitation hospital to continue to get better. I was there of 3 weeks learning to walk again, gain my balance and get stronger. I had continence problems, felt as though I had ants running all over my body and had the corset "banding" feeling around my torso. My eyesight slowly returned and some of the symptoms described above started to go away. Once I was discharged I went back to my parents again to recover a little more before going back to my house. I had chemotherapy once a month for 6 months and started to get better very slowly, although the chemo really knocked me around for that 6 month period and I was only working 20 hours a week and had much time off work sleeping at home as well as feeling very ill.
2007 -I returned to work part-time in February 2007 with the aim of increasing my hours back to full-time. I was still having chemotherapy during this period so I needed to look after myself, and didn't have the strength I need yet to fire on all cylinders. On top of that I was very worried about losing my job. I worked for a large bank and at that stage I hadn't done too much homework on what my rights were and so on. I started to do that just before I returned to work so that I knew where I stood. I got all my affairs and finances in order so that I had less stress and worry to deal with. Geez I was mad then, I'd have chemotherapy in the morning at the hospital, then go to work, then go out for drinks and dinner! I often look back at that time and think how mad I was!
I returned to work full-time in June 2007. I started to feel great and the only symptoms I had was fatigue and some cognitive problems. At the time I thought it was due to the lesions in my brain (only about 6) but I'm sure it was just all the drugs I was on. I had to step back from the position I was in at work and not manage a team anymore, to a job where I was a part of a team and had no stress to take home with me or late hours. Work was wonderful in helping me out at any stage I needed it. Unfortunately that was so difficult for me as I had many sick days and I always felt terrible as I'm a person that gives 150% to what I do.
2009 -The chemotherapy only lasted for 2 years a couple of months until June 2009. Dr. King had told me this however when you feel well you never think about it disappearing 2 years later. When some symptoms started to reappear I remember feeling angry as although I had 2 years of wellness, the opportunity to renovate my house and put a garden in and watch it grow. Have fun parties there and great dinner parties and hang out with my beloved pooch Miss. Muffy, and sell my place, I felt almost conned into having this wellness which would be taken away from me.
In June 2009 I lost my eyesight in my left eye and my right eye was slightly affected. I remember being at work one day and saying to a colleague that my eyesight was going. She looked at me as though I was crazy! I stayed at work that day and was pretty blind in that eye by the time it was home time. I felt guilty to go home ill, and I was so used to losing my vision by then. Dr. King started me on a drug called Tsyabri (a monthly infusion at the hospital).
August 2009 I developed Pneumonia.
September 2009 I had trouble walking and I had numbness in my right leg and buttock. I was off work for 2 weeks and went back to work using a walking frame. That was so hard for me to do as people would look at ask questions which is so sweet, however I'm the kind of person that doesn't like the fuss.
- My legs felt as though they were made of concrete they were so heavy, and my body was stiffening up.
2010 - The weekend of 16th and 17th of January 2010 I went away with friends for a great fun weekend. I went to work on the Monday 18.01.2010 feeling tired as we'd had a weekend of a few drinks and the Saturday had been very hot. I must admit looking back I wasn't very well and knew things weren't right. On that Monday in the morning my left big toe went numb, then my shin, calf and it kept moving all the way up my leg. I also had terrible bad frequent spasms in my back. I told a friend of mine however stayed at work that day. The following day I went to the Physiotherapist to see if she could help me with my back spasms as they weren't letting up. Nothing worked and I had the day off work just lying on my bed. As did I the next day. I was lucky as I staying with my Mum because I'd sold my house, bought some land and had signed up for a new home to be built. By day 3 the 20.01.2010 I gradually got worse in that I had trouble moving my left leg, my body felt like a dead weight, I had trouble using my bladder, and Mum had to help me off the toilet. In the past I'd have similar small attacks and just rest at home and go into the hospital daily for 3 days to have Prednisolone.
By day 4, 21.01.2010 I had to call Mum to help me out of bed and to the toilet. The only problem was that I couldn't stand up, my legs weren't working well, and my left leg had gone completely. As well as having trouble sitting up. It was time to go to hospital! Mum called an ambulance and off to hospital I went. I was admitted and was diagnosed as being paralysed from T2 downwards! I was also incontinent meaning my bladder and bowels weren't working. I had a catheter inserted. At this stage I was positive that I was just having another attack and a good dose of steroids would fix that, and I'd be walking in no time. Little did I know! I was to be in hospital for 7 months and in and out over the next 16 months resulting in being a paraplegic with so many other symptoms and my life was about to change dramatically. I was put on a Prednisolone dose of 5000mg over a 5 day period intravenously. Nothing changed however my left side was paralysed and I still had a lot of activity in my right side. After 10 days or so I went to a rehabilitation hospital to do physiotherapy and so on. When I got there I still felt terrible but as I knew no better I just soldiered on. Into about day 4 I was in the physiotherapy room and a doctor came running in and said they were transferring me back to the acute hospital immediately! He wouldn't tell me why so within a couple of hours I was back at the acute hospital. My neurologist Dr. King had been away during this period of time but was back and came to see me within a couple of hours. The doctors at the hospital had sent my blood off for a test to see if I had Neuromyelitis Optica instead of Multiple Sclerosis, and the results came back POSITIVE! Finally I had a diagnosis after all those years of uncertainty, drugs, specialists and treatments. My Mum was with me and I remember feeling relieved. We were onto my phone reading about it immediately. Mum would go home and research it as much as possible as well as my brother and friends. We asked all the doctors for as much information as possible. It turns out to be a very rare disease worldwide and the statistics are not really known. Apparently my Neurologist says it's common in Japan.
What was to follow was a nightmare! The next few months I became so ill with this wretched disease. I kept crashing and going downhill and these are some of the symptoms -
- I developed a chest infection and had trouble breathing,
- Urinary Tract infections,
- Numbness on the inside of both arms,
- A burning sensation, like severe sunburn all over my upper body and arms,
- My hands felt as though they were being stuck in boiling water and then it turned into my palms feeling as though they were made of sandpaper.
- My skin was smooth. My upper body and arms including my hands were so sensitive that they could not be touched. I used to wear gloves so that I could touch things like the sheets.
- I had shocking headaches coming from the back and base of my skull. This was caused by the spinal cord being so inflamed. I was on an incredible amount of drugs including large doses of Morphine for that at that stage. I very rarely get headaches. every time I had to move my head even a centimeter I'd scream. I can still remember that to this day.
- The skin on the back of my hands felt very tight.
- The banding (corset) feeling reappeared around my torso.
- Totally blind, blackout in the left eye. And the scariest of all, I was completely paralysed from T2 downwards. That meant I couldn't move my legs, wiggle my toes, sit up (I was like a rag doll), go to the toilet, and of course had all the symptoms listed above as well. I could hardly sneeze or cough so I had to do a breathing test each day. My legs and all different parts of my body couldn't feel when and if someone was touching me, especially my lower half from my waist down to my toes.
The diagram below shows you the different parts of the spine and spinal cord, as well as which parts of the body are affected when their is damage to the spinal nerve. It'll help you to relate to my story when I talk about what's not working properly.
The treatment started immediately.
- The specialists started with MORE METHYLPREDNISOLONE and more and more. This is a steroid and as I'd had so much over the years usually every 3 months I'd have an IV dose of 3000mg to 5000mg. My body didn't need any more as all it did or didn't do was take the inflammation out of the spinal cord, and make my face look very bloated, as well put on incredible amounts of weight. When I had it the steroid would make me eat and eat and eat everything in sight for 2 - 3 days! This was really a band aid and I continued to get worse.
- Then they moved onto one more dose of chemotherapy to see if that stopped the disease getting worse. However because I'd had 6 months of chemotherapy a few years prior, I could only have 1 treatment. That didn't work.
- The next was Plasmapheresis. Usually they stick a long soft tube into your neck vein and it's done that way as the tube has a few tubes coming out of the end of it so they can do the procedure. I went to the area where the Anaesthetist work and he tried 3 times to no avail. I asked where else it could be placed and he said the groin. As I was totally numb from middle of my breast/sternum area I suggested that he do that. They were reluctant as it can cause complications however I talked them into it and in it went, PAIN FREE!! I had 5 days of this treatment. The link below will explain what it is in more detail. This treatment didn't work.
- The specialists started with MORE METHYLPREDNISOLONE and more and more. This is a steroid and as I'd had so much over the years usually every 3 months I'd have an IV dose of 3000mg to 5000mg. My body didn't need any more as all it did or didn't do was take the inflammation out of the spinal cord, and make my face look very bloated, as well put on incredible amounts of weight. When I had it the steroid would make me eat and eat and eat everything in sight for 2 - 3 days! This was really a band aid and I continued to get worse.
- Then they moved onto one more dose of chemotherapy to see if that stopped the disease getting worse. However because I'd had 6 months of chemotherapy a few years prior, I could only have 1 treatment. That didn't work.
- The next was Plasmapheresis. Usually they stick a long soft tube into your neck vein and it's done that way as the tube has a few tubes coming out of the end of it so they can do the procedure. I went to the area where the Anaesthetist work and he tried 3 times to no avail. I asked where else it could be placed and he said the groin. As I was totally numb from middle of my breast/sternum area I suggested that he do that. They were reluctant as it can cause complications however I talked them into it and in it went, PAIN FREE!! I had 5 days of this treatment. The link below will explain what it is in more detail. This treatment didn't work.
I was then accepted into a trial drug program for a drug called Rituximab. This was done through the hospital for the drug company. At this stage I was willing to try anything. I had my first infusion on February 2010 followed by my second in March 2010. At that stage I started to improve. What it doe in basic terms is fight off the bad cells that attack the protective coating around my nerves, hence hopefully no new lesions and it gives your body a chance to heal. The Myelin Sheath (protective coating) around the nerves heals however once the nerve has been exposed and damaged, that doesn't.
I was accustomed to being very alert in hospitals as they didn't always give you the right drugs and you need to be a strong advocate for yourself. I remember a fair amount of my stay in ICU and was there for 36 hours. It turned out to be a very dangerous infection/bug I'd picked up in hospital. That could have been either hospital, no point blaming anyone, just get me better. I was then moved back to the ward I was in before and felt as though I had been hit by a bus. I very clearly remember telling my Mum that I wish I had died (there have only been a few times in my life when I've wished for this). I remember her replying "please don't leave me alone". I wasn't there for a few weeks and had lost my place at the rehabilitation hospital so needed to wait many weeks to have a bed to go back to.
- I have forgotten to mention that when I was able bodied I'd bought some land and signed a contract for the house to be built. The building started 4 days prior to my attack 17.01.2010! I built the house with 1 eye, very ill and all on my iPhone!
- I was discharged from hospital and back at the same rehabilitation hospital on 03.05.2010. From here on it was a tough road but a conquered one to learn how to live as a paraplegic with all the bells and whistles that came with the symptoms I had due to the disease and incontinence.
- I was discharged from hospital on 13.08.2010 and as I couldn't live with my Mum (her house was not designed for any renovations) I moved into my brand new home. Imagine settling, being discharged, having all my boxes and furniture etc. delivered to the new house (80 boxes all up) and me wheeling in! (You'll be able to see many of those stories in the Funny Stories section). Plus I have a special hospital type bed that I need to use and that needed to be delivered plus all the other equipment I need in order to shower. And as I had a carer coming in the morning to assist me, I needed to set up my bathroom and bedroom correctly. It was like climbing Mnt Everest and I was frozen like a deer in headlights. I remember putting a message on Facebook and 5 beautiful angels came to my rescue. Not to mention my Mum's incredibly hard work as well. However it was so frustrating for me as all the things I could do before I couldn't do. It was very difficult to have people doing things for you and you just sitting there.
- I have forgotten to mention that when I was able bodied I'd bought some land and signed a contract for the house to be built. The building started 4 days prior to my attack 17.01.2010! I built the house with 1 eye, very ill and all on my iPhone!
- I was discharged from hospital and back at the same rehabilitation hospital on 03.05.2010. From here on it was a tough road but a conquered one to learn how to live as a paraplegic with all the bells and whistles that came with the symptoms I had due to the disease and incontinence.
- I was discharged from hospital on 13.08.2010 and as I couldn't live with my Mum (her house was not designed for any renovations) I moved into my brand new home. Imagine settling, being discharged, having all my boxes and furniture etc. delivered to the new house (80 boxes all up) and me wheeling in! (You'll be able to see many of those stories in the Funny Stories section). Plus I have a special hospital type bed that I need to use and that needed to be delivered plus all the other equipment I need in order to shower. And as I had a carer coming in the morning to assist me, I needed to set up my bathroom and bedroom correctly. It was like climbing Mnt Everest and I was frozen like a deer in headlights. I remember putting a message on Facebook and 5 beautiful angels came to my rescue. Not to mention my Mum's incredibly hard work as well. However it was so frustrating for me as all the things I could do before I couldn't do. It was very difficult to have people doing things for you and you just sitting there.
Photos of what the house looked like the day I was discharged with all my furniture and boxes to be unpacked
2010 - The house slowly got to look like I wanted it to look inside. I had a very strong vision of how I wanted it to look, be and feel like before I became paraplegic and so ill that I was determined to achieve that. At the same time I was trying to get out of this "paddock" as I didn't know where to begin with finding out where I needed to go to find things I needed to help me with my new life style. Not to mention dealing with it emotionally and almost still living in those 2 mind sets that perhaps I might walk again? On top of that I had been in hospital for 7 to 7.5 months and my life was totally flipped upside down, I needed to get used to being in the world again. Plus I couldn't drive so my independence was very limited. I couldn't just jump into the car and go to the supermarket or hardware store (so important went being in a new home), or visit friends and so on. I was also in a new neighbourhood and the list just went on and on.
I am so grateful for my telephone, Google and computer and my brain and hands as without those tools I would never have been able to start to find my way and perhaps not be where I am today. These are some of the things I needed to find out -
- Where do I buy pads from (incontinent) and what size do I need?
- Where do I get catheters, night bags, day bags from and what do I need? Also due to the incontinence.
- I use pick up sticks (they are long sticks with a handle and claw) that helped me to pick up things when I dropped them.
- Ramps, used for getting in and out of places with 1 step. I needed one to get from the house into the garage so I could then open the remote garage door to be able to get in and out of the house.
- Where do I get a manual wheelchair from?
And so that journey began and slowly, very slowly I started to find suppliers and learn about things.
05.11.2010 BANG!!!!!!!!!!!!! I had another massive attack! 2.5 Months after coming out of hospital. I was paralysed again, lost everything I had worked so hard to gain again and was like a rag doll and back to square one. I went back into acute hospital and had my 3rd treatment of Rituximab with 11 doses of steroids (Methprednisolone). After 3 weeks in acute hospital I went to rehabilitation hospital again to gain my strength and start to learn to sit up etc. again. However now I had new lesions and they were on C3 and C4. I spent Christmas and New Year there and went home in January.
2011 - February 2011 - I felt as though something unusual was happening and that perhaps I had some inflammation in my spinal cord so I called my Neurologist. By now I had an amazing relationship with him and was just able to email his Personal Assistant who would then pass the message on to him. He'd call me almost immediately and organize a treatment of Methylprednisolone for me. Usually they were day trips to the hospital as by now I was so sick of hospitals, however this time I decided to go to the private hospital above his rooms. I have private insurance so why not use it. I caught a cab in in my wheelchair rather than an ambulance as I thought during the day I'll have my independence and be able to get around. I got settled and we started the treatment. All I can say is thanks to intuition as within the first couple of days (I can't remember which) I was having a full blown attack which was horrendous, one of the worst ever! I remember a beautiful friend coming in to visit me and while she was there she was massaging a part of my lower back as it was spasming and I was in such severe pain it was the only way I could get through each second. (Wow as I write this I'm taken right back to that moment and can so vividly remember that scene and how I felt and everything else that goes along with it). I was so ill for about 2 - 3 weeks (again we didn't record it and I can't remember) however when I was well enough to be discharged I went back to the same rehabilitation hospital I'd only been in a month ago.
February 2011 - I caught a cab and wheeled in there saying "I'm back". I remember the nursing staff asking me if I was there for an outpatient physiotherapy session or visiting someone. They were all shocked that I was back but we happy as I got on so well with so many of them and we always had fun. I got settled and this time the attack had left my lower body alone, but had awakened C3 and C4 and my hands and especially my left arm had been affected. I had what was called Propioception.
I am so grateful for my telephone, Google and computer and my brain and hands as without those tools I would never have been able to start to find my way and perhaps not be where I am today. These are some of the things I needed to find out -
- Where do I buy pads from (incontinent) and what size do I need?
- Where do I get catheters, night bags, day bags from and what do I need? Also due to the incontinence.
- I use pick up sticks (they are long sticks with a handle and claw) that helped me to pick up things when I dropped them.
- Ramps, used for getting in and out of places with 1 step. I needed one to get from the house into the garage so I could then open the remote garage door to be able to get in and out of the house.
- Where do I get a manual wheelchair from?
And so that journey began and slowly, very slowly I started to find suppliers and learn about things.
05.11.2010 BANG!!!!!!!!!!!!! I had another massive attack! 2.5 Months after coming out of hospital. I was paralysed again, lost everything I had worked so hard to gain again and was like a rag doll and back to square one. I went back into acute hospital and had my 3rd treatment of Rituximab with 11 doses of steroids (Methprednisolone). After 3 weeks in acute hospital I went to rehabilitation hospital again to gain my strength and start to learn to sit up etc. again. However now I had new lesions and they were on C3 and C4. I spent Christmas and New Year there and went home in January.
2011 - February 2011 - I felt as though something unusual was happening and that perhaps I had some inflammation in my spinal cord so I called my Neurologist. By now I had an amazing relationship with him and was just able to email his Personal Assistant who would then pass the message on to him. He'd call me almost immediately and organize a treatment of Methylprednisolone for me. Usually they were day trips to the hospital as by now I was so sick of hospitals, however this time I decided to go to the private hospital above his rooms. I have private insurance so why not use it. I caught a cab in in my wheelchair rather than an ambulance as I thought during the day I'll have my independence and be able to get around. I got settled and we started the treatment. All I can say is thanks to intuition as within the first couple of days (I can't remember which) I was having a full blown attack which was horrendous, one of the worst ever! I remember a beautiful friend coming in to visit me and while she was there she was massaging a part of my lower back as it was spasming and I was in such severe pain it was the only way I could get through each second. (Wow as I write this I'm taken right back to that moment and can so vividly remember that scene and how I felt and everything else that goes along with it). I was so ill for about 2 - 3 weeks (again we didn't record it and I can't remember) however when I was well enough to be discharged I went back to the same rehabilitation hospital I'd only been in a month ago.
February 2011 - I caught a cab and wheeled in there saying "I'm back". I remember the nursing staff asking me if I was there for an outpatient physiotherapy session or visiting someone. They were all shocked that I was back but we happy as I got on so well with so many of them and we always had fun. I got settled and this time the attack had left my lower body alone, but had awakened C3 and C4 and my hands and especially my left arm had been affected. I had what was called Propioception.
- 2016 - I can say that today I am in remission. I have all of the above symptoms, I am a paraplegic, unable to walk or even stand. 2015 Was a terrible year for health (that's in a few of my blogs) however today, 2016 I am coping. I most certainly have bad days but I fiercely hang on to where I'm at and am so grateful that I am not in and out of hospital for now. I just don't let any fear enter my head re where or what could happen with this horrible and unpredictable disease, other than I would like a cure, as well as a spine that works. I Take each day as it comes and just do what I want according to how I feel on the day (depending on the commitments I have), and what my body allows me to do.
PLEASE REMEMBER ALL YOUR OTHER CHECK UPS - Although I have this disease, IT IS SO IMPORTANT TO STILL TAKE CARE OF YOUR BODY. Such as (for women) pap smears, bone density tests, mammograms if over 50. Diabetes check ups and especially the dentist as taking steroids makes teeth very brittle, plus all the other tests especially depending which drugs you are on as they may affect your kidney and liver function as well. Have a great GP who will help take care of all of this with you.
PLEASE REMEMBER ALL YOUR OTHER CHECK UPS - Although I have this disease, IT IS SO IMPORTANT TO STILL TAKE CARE OF YOUR BODY. Such as (for women) pap smears, bone density tests, mammograms if over 50. Diabetes check ups and especially the dentist as taking steroids makes teeth very brittle, plus all the other tests especially depending which drugs you are on as they may affect your kidney and liver function as well. Have a great GP who will help take care of all of this with you.
Below are some photos of me in various hospitals and stages of the disease. Although it was one of the worst times there were many fun times as well.
Photos from my 1st stay at Royal Talbot rehabilitation after becoming paraplegic in 2010.
|
I used to organise fun nights for a group of patients that I got very close to where we'd order different takeaway foods as the hospital food was so boring.
|
Various photos of my different rooms and bathrooms in hospitals.
|
|
|