Woke up at 12:17am, 03:30, 04:52 and 06:55 stiff, in pain and unable to roll over.......stupid arthritic back and hips. Kids are up and at 'em at 7am on the dot. I would say eager to go back to school following the half term jollies which saw them explore Stonehenge but I suspect not.
Today I have to go through the rigmarole of my monthly blood test to make sure the medication for the RA and PsA is beating the disease into submission and that my liver isn't throwing a major strop in the process. After getting dressed......including putting on tights which is like bending tree trunks and manipulating the unbendable to wrap in lycra and nylon. Daily morning meds taken....I get the bus to the hospital. Get ugly looks off the older folks for using a freedom pass and then sitting in a disabled seat.......they must think I've stolen the pass or something, but when I make eye contact they look away.
Arriving at the infamous Queens Hospital I make my way to the vampires waiting area and take a ticket......219......The number on the board is 133, it's going to be a long wait me thinks. T setting switched on on the hearing aids and I take out my kindle and chuckle away to myself reading John Bishops autobiography while waiting for my number to be called for the rather cheerful vampire brandishing a sharp needle to extract the required amount of my precious red stuff to check if the meds I plough into my body everyday are doing their job.......it was an hour and a half wait and took 2 attempts to stab the right place.
This afternoon I had the honour to talk to a group of lovely people at Arthritis Research UK about my experiences of living with arthritis. I take my time getting there in the hustle and bustle of London so not to use all my spoons beforehand. The group is friendly and welcoming an I run through my presentation. I had forgotten some of the photos which had been used and keep having a chuckle. The talk goes well and there are plenty of questions asked after. It's important to me to do these talks, raise awareness of arthritis and other invisible illnesses to break down barriers and misconceptions. It's charities like ARUK that give people like me hope for the future through their research and support.
Heading home it is bitterly cold and I am fast running out of spoons. Pain and fatigue are encompassing my body. A voice comes over the tannoy speaking in a language incomprehensible which, when translated by the frustrated lady standing on platform 3 of Mile End station says the glorious District Line has severe delays.........deep deep joy.
I decide, for my own sanity and safety, to step back from the barging hoards of non-smiling lemmings trying to make their way home from the rat race. Eventually a tube arrives that I can manoeuvre my stiffening body on to. The London Underground is not fully accessible for disabled people and the challenges faced by people of limited mobility blur into insignificance in comparison to the cost of upgrading the whole of the underground network.
Doing the talks and raising awareness for invisible illnesses including arthritis has shown me how much I have achieved despite the challenges I face. I continue to play the hand I have been dealt. I like to think I am a positive person......I don't moan continuously about how unfair this all is and not constantly questioning "why me?" I will continue to support those who feel lost and consumed by these challenges because it gives me purpose and I am proof that because my life has changed in ways I never dreamt of, it doesn't mean my life is over.
Until next time......Use your spoons wisely and keep pain free xxxx
Monday, 23 February 2015
Monday, 13 October 2014
Wednesday, 27 August 2014
Follow Your Dreams, they are there to be acheived
Being disabled doesn't mean you can't have dreams and you can't make your dreams come true. My advice......grab them with both arthritic hands and don't look back, don't let people tell you your dreams are stupid and don't let people tell you "you can't do it." Because You CAN!
Having rheumatoid arthritis and psoriatic arthritis with a side helping of fibromyalgia (it's quite a list isn't it) causes such challenges, pain, fatigue, limited mobility etc etc....the list is endless so I won't bore you that I thought I would be stuck in my wheelchair...crutches on a good day, watching from the side lines as the world carried on regardless around me. People living their lives and reaching for their dreams. I never thought I would be able to have the exhilarating experience that I have had today.
For a long time I have wanted to fly, to feel the liberation and exhilaration of flight. But having legs that don't work, painful body and being stuck in a wheelchair or only being able to get around with the use of crutches I figured that I would only be able to fly on commercial airlines when going on holiday. Last year I was directed to Flying Scholarships for Disabled People and I have finally plucked up the courage...yes courage is the word, to apply. I am waiting for my GP to give the final sign off then its a waiting game for next years selection process.
My gorgeous hubby,my rock Paul bought me a half hour flight in a Steerman Bi-Plane. Tony the pilot at Aerobatic Tactics was very helpful. He was very much aware of my challenges of mobility. He explained everything, had a stool and steps ready to help me into the plane and guided me. In a Bi-plane the pilot sits at the back and I had the most amazing view sitting at the front. As the plane can the flown from both seats I had all the instruments in my little pod including the joystick which looked like a broom handle.....literally! I had a flying hat on with a headset so that Tony could talk to me and I could talk to him. I'm strapped in so there is no chance of falling out.....if you saw how hard it was for me to get in thought of falling out is really quite comical.
I had a half hour flight over the Essex and Kent countryside. The feeling was exhilarating and I still can't stop smiling. It has spurred me on to keep following my dreams. The wind blowing across my face, the view, the sheer feeling of flight. Up there I wasn't Catherine with arthritis, or disabled Catherine, or Catherine in the wheelchair. I was Catherine living a dream.
I've tried several times to upload a couple of pictures but have been unsuccessful....I will keep trying xx
I have had many comments, messages and emails telling me I am an inspiration and that I have helped people just by telling my story. I am so pleased I have had the opportunity to do so. I had a wonderful meeting with Arthritis Research UK last week about talking about Living With Arthritis at their Corporate Induction Days. Of course I said yes. Raising awareness about the challenges and struggles can only be a good thing. I have now started methotrexate which is a DMARD, the side effects are not nice but I am hoping it will get the RA and PsA under control. I could be upset and angry that these diseases have been misdiagnosed for so long but I have just happy I have started treatment. I'm not going to get back to how I was a few years ago but with a bit of luck I will be able to get some sort of normality into my life and the lives of my children.
I have met many wonderful and inspirational people due to having these illnesses. I am signed off work on no pay as I am no physically able to hold down a full time job and all it entails. I am going through the formal process which in essence is a disciplinary for my sickness leave, I may or may not lose my job but I refuse to let arthritis put a dampener on my spirit. They say "as one door closes, another door opens" I wonder what door is opening next.
Gentle Hugs
Catherine.....still smiling xxxx
Having rheumatoid arthritis and psoriatic arthritis with a side helping of fibromyalgia (it's quite a list isn't it) causes such challenges, pain, fatigue, limited mobility etc etc....the list is endless so I won't bore you that I thought I would be stuck in my wheelchair...crutches on a good day, watching from the side lines as the world carried on regardless around me. People living their lives and reaching for their dreams. I never thought I would be able to have the exhilarating experience that I have had today.
For a long time I have wanted to fly, to feel the liberation and exhilaration of flight. But having legs that don't work, painful body and being stuck in a wheelchair or only being able to get around with the use of crutches I figured that I would only be able to fly on commercial airlines when going on holiday. Last year I was directed to Flying Scholarships for Disabled People and I have finally plucked up the courage...yes courage is the word, to apply. I am waiting for my GP to give the final sign off then its a waiting game for next years selection process.
My gorgeous hubby,my rock Paul bought me a half hour flight in a Steerman Bi-Plane. Tony the pilot at Aerobatic Tactics was very helpful. He was very much aware of my challenges of mobility. He explained everything, had a stool and steps ready to help me into the plane and guided me. In a Bi-plane the pilot sits at the back and I had the most amazing view sitting at the front. As the plane can the flown from both seats I had all the instruments in my little pod including the joystick which looked like a broom handle.....literally! I had a flying hat on with a headset so that Tony could talk to me and I could talk to him. I'm strapped in so there is no chance of falling out.....if you saw how hard it was for me to get in thought of falling out is really quite comical.
I had a half hour flight over the Essex and Kent countryside. The feeling was exhilarating and I still can't stop smiling. It has spurred me on to keep following my dreams. The wind blowing across my face, the view, the sheer feeling of flight. Up there I wasn't Catherine with arthritis, or disabled Catherine, or Catherine in the wheelchair. I was Catherine living a dream.
I've tried several times to upload a couple of pictures but have been unsuccessful....I will keep trying xx
I have had many comments, messages and emails telling me I am an inspiration and that I have helped people just by telling my story. I am so pleased I have had the opportunity to do so. I had a wonderful meeting with Arthritis Research UK last week about talking about Living With Arthritis at their Corporate Induction Days. Of course I said yes. Raising awareness about the challenges and struggles can only be a good thing. I have now started methotrexate which is a DMARD, the side effects are not nice but I am hoping it will get the RA and PsA under control. I could be upset and angry that these diseases have been misdiagnosed for so long but I have just happy I have started treatment. I'm not going to get back to how I was a few years ago but with a bit of luck I will be able to get some sort of normality into my life and the lives of my children.
I have met many wonderful and inspirational people due to having these illnesses. I am signed off work on no pay as I am no physically able to hold down a full time job and all it entails. I am going through the formal process which in essence is a disciplinary for my sickness leave, I may or may not lose my job but I refuse to let arthritis put a dampener on my spirit. They say "as one door closes, another door opens" I wonder what door is opening next.
Gentle Hugs
Catherine.....still smiling xxxx
Thursday, 19 June 2014
Its been a while.....
It's been a while since I last posted. Things have been moving at a pace and my health has not been the best, in fact I have had another partial knee replacement, 2 further hospital stays, 2 MRI's, a number of x-rays, bilateral hearing aids fitted and received the diagnosis of Rheumatoid Arthritis and Psoriatic Arthritis, both are autoimmune diseases and inflammatory forms of arthritis. My liver has thrown a major strop so I have been taken of Pregablin which is a med for the fibromyalgia and I am waiting to start Methotrexate for the RA and PsA....so hurry up liver and behave!
When you have ill health or challenging times you certainly find out who your friends are. We have learnt this the hard way and the betrayal leaves you reeling and completely unsure of who you can trust. The one thing I do know is my 3 children and Paul (My Rock) are the only ones that matter and I would go to the ends of the earth for them. Its a sorry state of affairs and after talking to a number of other people have found it is not an uncommon occurrence. I feel for those who do not have a support net work or a loving and supportive partner. That's the good thing about online support groups. I have found a couple and couldn't be without them.
People often don't realise the impact that illness has on the partner of the person. Partners want to be strong and hide their feelings so that the person who is ill doesn't get upset or worried. Partners who turn into carers have their own worries and it is important that they have some time to themselves and someone else to talk to.
Health issues have come to a head recently and I have been signed off from work for a further 3 months which will no doubt end in medical dismissal. I have had a fantastic career and met and worked with some fantastic and talented people. I haven't found any relief from a recent high dose steroid injection I have had, so far it has made me really weepy. To be the main income earner and to have an illness which causes pain, inflammation, fatigue and mobility issues (to name but a few) is a lot of pressure. I am thankful to Paul and his support, I would be lost without him. I am trying to remain positive and look to the future, hopefully it is one where pain is controlled and kept to a minimum so I can enjoy my children growing up and becoming lovely independent young people.
When you have ill health or challenging times you certainly find out who your friends are. We have learnt this the hard way and the betrayal leaves you reeling and completely unsure of who you can trust. The one thing I do know is my 3 children and Paul (My Rock) are the only ones that matter and I would go to the ends of the earth for them. Its a sorry state of affairs and after talking to a number of other people have found it is not an uncommon occurrence. I feel for those who do not have a support net work or a loving and supportive partner. That's the good thing about online support groups. I have found a couple and couldn't be without them.
People often don't realise the impact that illness has on the partner of the person. Partners want to be strong and hide their feelings so that the person who is ill doesn't get upset or worried. Partners who turn into carers have their own worries and it is important that they have some time to themselves and someone else to talk to.
Health issues have come to a head recently and I have been signed off from work for a further 3 months which will no doubt end in medical dismissal. I have had a fantastic career and met and worked with some fantastic and talented people. I haven't found any relief from a recent high dose steroid injection I have had, so far it has made me really weepy. To be the main income earner and to have an illness which causes pain, inflammation, fatigue and mobility issues (to name but a few) is a lot of pressure. I am thankful to Paul and his support, I would be lost without him. I am trying to remain positive and look to the future, hopefully it is one where pain is controlled and kept to a minimum so I can enjoy my children growing up and becoming lovely independent young people.
Thursday, 27 February 2014
A Basic Human Need.
The basic human need or desire is to be loved and to love. Just because someone is disabled in someway doesn't mean that they don't want or deserve to be loved and to love. I was lucky enough to be part of Arthritis Research UK's recent campaign focusing on arthritis and relationships. I was quoted in their press release and I was interviewed by Dave Monk from BBC Radio Essex. It was an interesting experience and one I glad I took part in even though I cringed all the way through the airing of the pre recorded interview at the sound of my northern accent sounding out across the airwaves!
Imagine your partner not being able to hold your hand because it hurts, not being able to walk hand in hand down the street, sit comfortably in a restaurant for a romantic meal, laying in pain when your partner roles over in bed and that doesn't take into account a physical/intimate relationship. Living with arthritis poses all this challenges and hurdles. I am amazingly lucky to have my wonderful hubby who understands, but we wouldn't be as close as we are now without being able to talk to each other about how both of us are feeling. A relationship is a two way street and both parties must be able to communicate. After all communication is one of the keys to a successful relationship.
I had a successful rheumy appointment on the 19th. The doctor ACTUALLY sat and listened to me and Paul about symptoms and promptly ordered brain and spine MRI and a referral to see a neurologist for the test for MS. It makes a difference to be listened to and for a doctor to take ownership of your treatment. I will still see the rheumy as well as the neurologist.
As I said in my previous blog post...I is deaf! I had my MRI for my ears this week. Now, I have had quite of few of these scans and they have never really bothered me before, but then I was going in the giant polo mint feet first NOT head first. The radiologist asks me to lay down on the bed and rest my head in a moulded bit of plastic and put ear defenders on allegedly to protect my hearing. He then put what can only be described as a cage over my head. At this point I thought it best to shut my eyes and think happy thoughts of cakes, chocolate and holidays! Now bearing in mind I have already lost 40% of my hearing and I am wear ear defenders to protect my remaining hearing that Giant Polo Mint is mighty loud! The whamping noise was mega loud and at one point I thought the whole thing was going to either take off or fall apart it was juddering around more than a washing machine on spin cycle!
I'm still waiting for my audiology appointment to be fitted with hearing aids, for the time being I will be thankful for the peace and quiet I have by being hard of hearing :-)
Imagine your partner not being able to hold your hand because it hurts, not being able to walk hand in hand down the street, sit comfortably in a restaurant for a romantic meal, laying in pain when your partner roles over in bed and that doesn't take into account a physical/intimate relationship. Living with arthritis poses all this challenges and hurdles. I am amazingly lucky to have my wonderful hubby who understands, but we wouldn't be as close as we are now without being able to talk to each other about how both of us are feeling. A relationship is a two way street and both parties must be able to communicate. After all communication is one of the keys to a successful relationship.
I had a successful rheumy appointment on the 19th. The doctor ACTUALLY sat and listened to me and Paul about symptoms and promptly ordered brain and spine MRI and a referral to see a neurologist for the test for MS. It makes a difference to be listened to and for a doctor to take ownership of your treatment. I will still see the rheumy as well as the neurologist.
As I said in my previous blog post...I is deaf! I had my MRI for my ears this week. Now, I have had quite of few of these scans and they have never really bothered me before, but then I was going in the giant polo mint feet first NOT head first. The radiologist asks me to lay down on the bed and rest my head in a moulded bit of plastic and put ear defenders on allegedly to protect my hearing. He then put what can only be described as a cage over my head. At this point I thought it best to shut my eyes and think happy thoughts of cakes, chocolate and holidays! Now bearing in mind I have already lost 40% of my hearing and I am wear ear defenders to protect my remaining hearing that Giant Polo Mint is mighty loud! The whamping noise was mega loud and at one point I thought the whole thing was going to either take off or fall apart it was juddering around more than a washing machine on spin cycle!
I'm still waiting for my audiology appointment to be fitted with hearing aids, for the time being I will be thankful for the peace and quiet I have by being hard of hearing :-)
Sunday, 9 February 2014
Just plodding along......and then you're declared deaf!
Just plodding along, doing my best and making the best of the situation I am living. Lets face it, those of us with any form of arthritis and/or fibromyalgia have to keep going, it's what we do to survive the day.....and the night.
We got through the festive period in a blur of wrapping paper roast dinners, cakes and leftovers. Fatigue, pain and medication adding the fog which I move in. People comment about having family arguments over holiday periods and we have never experienced this until this Christmas. We decided that we didn't appreciate being continually lied to and ignored that we have now eliminated all negativity from out lives which unfortunately means we have walked away from some family members and other family members, have stuck their noses in where it wasn't wanted, only listened to one side of a story and not wanted to listen and walked away. It is like any chronic illness, people don't listen, don't understand, think they know it all or have the magic cure and can't be bothered to actually find the truth out. I have to say we are SO much more relaxed and happier now that we don't have the stress and negativity from these people around us. Having support and love is what is needed when you are fighting these challenges and illnesses.
I have taken the step to go back to work on a more full time basis...in the office rather than working from home as I would like to hold on to my career for as long as possible. I thought I would be fine, oh how wrong was I?! Travelling into The City 4 days a week in a taxi poses it's problems. You may say "lucky you! cushy number" but really...joints seize up, pain shoots through hips and back. Travelling by car is not as "cushy" as it may sound. Some cars are lower than others. You would chuckle to yourself if you saw me rolling out of the low Toyota the other day. It really was something that was worthy of You've Been Framed only I didn't get my £250 and had to work 8 hours in the office before the hour and half journey home in said car again!
I think I am doing ok in the office, I'm on the decaf coffee and ploughing through my work load nicely when Mr Fatigue decides to hit me head on like a Route Master Bus. I have a meeting to attend trying desperately to keep my eyes open and praying to any deity that might be in the vicinity that no-one notices my eyelids falling like lead weights and my head bobbing like apples in water. Needless to say it was noticed by the chair of the meeting who very graciously said that said meeting wasn't exactly riveting......oooo eck!
My hearing has been going down hill for a number of years, it's something that has gradually crept up on me. We started noticing that the TV was being turned up louder and my common response to people who were talking to me was "Eh?" and "Pardon?" I haven't liked talking on the phone for a long time now as I couldn't quite make out what the person on the end of the line was saying. This is not good when you have a large number of telephone conferences as part of your work. So! I am referred to the ENT consultant at the local hospital and guess what....yes I failed the hearing test :-(
It's a surreal place, the ENT and audiology department. When people speak to you they speak clearly and look at you. I'm amazed! I had 3 different tests and felt like a patient in an old Victorian hospital going for electric shock treatment with the headphones and probey thingies on my head. The outcome of all these tests where sounds of varying frequencies and volumes are sounded into my lug 'oles and through the bones behind my ears is that I have 40% hearing loss in my right ear and 30% hearing loss in my left ear. I am slowly going deaf. Permanent sensorial hearing loss. I am now waiting for an appointment with audiology to have moulds taken so I can be fitted with hearing aids. Im hoping I can have purple hearing aids. SO we can now add Deaf to the conditions after my name.
February seems to be hospital appointment month. 31st Jan (yes I know I said Feb but it's practically Feb) I had my pre-op assessment for my left knee to be partially replaced. Still no date for it but with a bit of luck it will be by 25th April as this is when the MRSA swabs and pre-op run out. 6th Feb was hearing assessment (Big Fat Fail!) 13th Feb, apart from being my Grandpa's birthday, is eyes check up at Moorfields and 19th Feb is Rheumatology at a different hospital. I should get my EMG test results back...now that's an interesting test those EMG's! Electric currents passed through your nerves to check if they are working properly...sending tingling sensations through your limbs and extremities before intensifying and making them twitch and jump. Bizarre! It is still unknown whether I have MS or not but this, apparently, is to be discussed at the appointment on 19th. I may need an MRI of my brain and spine but I have a number of symptoms, although they could also be fibro symptoms
I've bought boots! ....you may think this is a completely random statement but....with the tingling in my feet and legs I keep tripping over my feet boots help support my feet and my ankles. It is really quite embarrassing.....and painful when I fall.
This week has had some positives in it. I have been interviewed by a journalist on the behalf of Arthritis Research UK to discuss the impact of chronic illness on relationships. It was a good experience and I look forward to reading the finished article. You all know that I have an awesome hubby who helps me in all aspects of everyday life but some people are not so lucky to have the support I have and struggle more than they let anyone know.
Half term is round the corner and I have the whole week off work as annual leave WOOHOO! I am looking forward to it but it will throw some challenges and obstacles in the way as we embark on some day trips as a family....more to come on that! I will let you know the next adventures of the Ferrari and Arthur Ritis!
On that note I will let you all go and enjoy the remains of your weekend.
Stay Safe and Pain free
xxxx
We got through the festive period in a blur of wrapping paper roast dinners, cakes and leftovers. Fatigue, pain and medication adding the fog which I move in. People comment about having family arguments over holiday periods and we have never experienced this until this Christmas. We decided that we didn't appreciate being continually lied to and ignored that we have now eliminated all negativity from out lives which unfortunately means we have walked away from some family members and other family members, have stuck their noses in where it wasn't wanted, only listened to one side of a story and not wanted to listen and walked away. It is like any chronic illness, people don't listen, don't understand, think they know it all or have the magic cure and can't be bothered to actually find the truth out. I have to say we are SO much more relaxed and happier now that we don't have the stress and negativity from these people around us. Having support and love is what is needed when you are fighting these challenges and illnesses.
I have taken the step to go back to work on a more full time basis...in the office rather than working from home as I would like to hold on to my career for as long as possible. I thought I would be fine, oh how wrong was I?! Travelling into The City 4 days a week in a taxi poses it's problems. You may say "lucky you! cushy number" but really...joints seize up, pain shoots through hips and back. Travelling by car is not as "cushy" as it may sound. Some cars are lower than others. You would chuckle to yourself if you saw me rolling out of the low Toyota the other day. It really was something that was worthy of You've Been Framed only I didn't get my £250 and had to work 8 hours in the office before the hour and half journey home in said car again!
I think I am doing ok in the office, I'm on the decaf coffee and ploughing through my work load nicely when Mr Fatigue decides to hit me head on like a Route Master Bus. I have a meeting to attend trying desperately to keep my eyes open and praying to any deity that might be in the vicinity that no-one notices my eyelids falling like lead weights and my head bobbing like apples in water. Needless to say it was noticed by the chair of the meeting who very graciously said that said meeting wasn't exactly riveting......oooo eck!
My hearing has been going down hill for a number of years, it's something that has gradually crept up on me. We started noticing that the TV was being turned up louder and my common response to people who were talking to me was "Eh?" and "Pardon?" I haven't liked talking on the phone for a long time now as I couldn't quite make out what the person on the end of the line was saying. This is not good when you have a large number of telephone conferences as part of your work. So! I am referred to the ENT consultant at the local hospital and guess what....yes I failed the hearing test :-(
It's a surreal place, the ENT and audiology department. When people speak to you they speak clearly and look at you. I'm amazed! I had 3 different tests and felt like a patient in an old Victorian hospital going for electric shock treatment with the headphones and probey thingies on my head. The outcome of all these tests where sounds of varying frequencies and volumes are sounded into my lug 'oles and through the bones behind my ears is that I have 40% hearing loss in my right ear and 30% hearing loss in my left ear. I am slowly going deaf. Permanent sensorial hearing loss. I am now waiting for an appointment with audiology to have moulds taken so I can be fitted with hearing aids. Im hoping I can have purple hearing aids. SO we can now add Deaf to the conditions after my name.
February seems to be hospital appointment month. 31st Jan (yes I know I said Feb but it's practically Feb) I had my pre-op assessment for my left knee to be partially replaced. Still no date for it but with a bit of luck it will be by 25th April as this is when the MRSA swabs and pre-op run out. 6th Feb was hearing assessment (Big Fat Fail!) 13th Feb, apart from being my Grandpa's birthday, is eyes check up at Moorfields and 19th Feb is Rheumatology at a different hospital. I should get my EMG test results back...now that's an interesting test those EMG's! Electric currents passed through your nerves to check if they are working properly...sending tingling sensations through your limbs and extremities before intensifying and making them twitch and jump. Bizarre! It is still unknown whether I have MS or not but this, apparently, is to be discussed at the appointment on 19th. I may need an MRI of my brain and spine but I have a number of symptoms, although they could also be fibro symptoms
I've bought boots! ....you may think this is a completely random statement but....with the tingling in my feet and legs I keep tripping over my feet boots help support my feet and my ankles. It is really quite embarrassing.....and painful when I fall.
This week has had some positives in it. I have been interviewed by a journalist on the behalf of Arthritis Research UK to discuss the impact of chronic illness on relationships. It was a good experience and I look forward to reading the finished article. You all know that I have an awesome hubby who helps me in all aspects of everyday life but some people are not so lucky to have the support I have and struggle more than they let anyone know.
Half term is round the corner and I have the whole week off work as annual leave WOOHOO! I am looking forward to it but it will throw some challenges and obstacles in the way as we embark on some day trips as a family....more to come on that! I will let you know the next adventures of the Ferrari and Arthur Ritis!
On that note I will let you all go and enjoy the remains of your weekend.
Stay Safe and Pain free
xxxx
Thursday, 26 December 2013
And Fibro Comes To Stay.......
Apologies that I have not posted for a few months. It has been a trying time for us in the Manning household as we learn to live with the things that have joined us in our journey of life.
So! The new knee is doing good! There is no grinding underneath my right knee cap which is AMAZING! I can't remember a time when my blasted knee cap didn't get stuck, or sounded like I was walking on gravel with hob nailed boots on. Unfortunately there is still pain in the medial compartments of the joint but I was prepared for that as they haven't replaced those bits. My surgeon and physioterrorists are happy with my progress and I am on the waiting list to have my left knee partially replaced which should be sometime in March. I am never going to be free of arthritis and success for me would be getting around with a walking stick instead of crutches and a wheelchair.
My GP FINALLY agreed to send me to see a rheumatologist, he suspected Lupus and sent me to the Lupus Clinic at St Thomas' hospital in London. The consultant there doesn't suspect lupus, thank goodness, but Fibromyalgia instead. He sent me to have a full blood screen to rule out anything else. The Vampires took 10 viles of blood and practically drained my arm dry. I get the results on 8th April 2014...yes it's a long wait but hey ho!
The day after I saw the rheumatologist I was in agony, no energy, extreme fatigue and severe tingling, pins and needles which caused enhanced pain. I didn't know what to do with myself. I had taken my full dosage of tramadol and paracetamol and NOTHING was helping. I was at my wits end when I phoned NHS 111 at 7pm. The young lady went through my symptoms and advised that she would be sending an ambulance.........the ambulance arrived at 10:55pm......
Once at the hospital I was given morphine to help the pain, which it did but I still had the tingling. I saw a registrar who was surprised I hadn't been tested for MS.....I am now starting to panic. I'm on my own in Queens Hospital which isn't known for it's competencies. He advises that they are keeping me in so at least they can start the ball rolling with trying to help me. I'm wheeled off in my bed to have a CT scan at 2am......I chuckle to myself and ask if they found a brain. The young radiographer smiled back and said "of course". I'm settled into the medical assessment unit. Settled is not really the word for it. There is a young woman on the ward who is clearly distressed and having the screaming heebie geebies and spent the next 5 hours screaming until they moved her to a side room. There is no mobile signal on the ward so my contact with my Rock, Paul, has ceased. Now it's a very lonely time. No windows to look our of and only artificial light. Luckily the lady opposite me has a wicked sense of humour and we hit it off immediately.
I am assessed by another 2 doctors/consultants. There is weakness on my right side including my right lung. A chest x-ray is done at stupid o'clock which shows by chest is clear. The tingling is still intense but the pain is under control. Both doctors perform the trigger point test which sends me through the roof. I react to all 18 trigger points and the doctors give me the diagnosis of Fibromyalgia. SHIT!, this thing doesn't get any better. I am prescribed gabapentin to help with my tremor which has been most noticeable today. They write a note to ask my GP to refer me to physiotherapy and Hydrotherapy to help with mobility and flexibility.....Guess what my GP said?....NO!....he said that if the hospital say I need it then they can refer me. I've kept the note for future reference as basically it all comes down to budgets and my GP hates making referrals....it's not just me, other people who have the same GP say the same about him. The hospital also informed me that they have referred me to their rheumatology department so they can assess if I need to be referred to a neurologist to be checked for MS. I am also waiting for EMG's Nerve Conduction Studies to check the extent of the nerve damage which is causing the extreme tingling. General consensus is I need to have tests to rule out MS which they can't do through A&E.
SO! I don't seem to be having any side effects with the gabapentin. It helps with some o the pain along with the tramadol but it doesn't help with the tingling which is hindering my mobility along with the pain. I feel as though I am walking on dead legs. I stumble more and I struggle getting around. Along with all the other fibro symptoms.....pain, swelling, fatigue, tremor, dry eyes, dry mouth, forgetting my words and struggling with speech amongst others.
All in all it's been a lot to get my head around as we play this waiting game for appointments again.
Woohoo!!! The Festive Season is upon us!!!! I love this time of year. Seeing the magic in my children's eyes makes all the pain worthwhile.
I made our festive cake.....in stages.
It is rather yummy! fruit cake covered in marzipan, chocolate fondant and white fondant with holly decorations.
The key to surviving the festive season is by pacing yourself and getting as much help as possible. My wonderful friend Stacy sent me a spoon so that I will always have a spare if I need it!
I was so touched! It certainly made me smile. To have a friend who understands exactly what you are feeling and going through are worth their weight in gold........or Spoons!!!
They did a fantastic job setting our festive feasting table!
Even Arthur Bear got in on the act! In the new year I am going to have to get him a mate, Duchess Fibro ;-)
So! The new knee is doing good! There is no grinding underneath my right knee cap which is AMAZING! I can't remember a time when my blasted knee cap didn't get stuck, or sounded like I was walking on gravel with hob nailed boots on. Unfortunately there is still pain in the medial compartments of the joint but I was prepared for that as they haven't replaced those bits. My surgeon and physioterrorists are happy with my progress and I am on the waiting list to have my left knee partially replaced which should be sometime in March. I am never going to be free of arthritis and success for me would be getting around with a walking stick instead of crutches and a wheelchair.
My GP FINALLY agreed to send me to see a rheumatologist, he suspected Lupus and sent me to the Lupus Clinic at St Thomas' hospital in London. The consultant there doesn't suspect lupus, thank goodness, but Fibromyalgia instead. He sent me to have a full blood screen to rule out anything else. The Vampires took 10 viles of blood and practically drained my arm dry. I get the results on 8th April 2014...yes it's a long wait but hey ho!
The day after I saw the rheumatologist I was in agony, no energy, extreme fatigue and severe tingling, pins and needles which caused enhanced pain. I didn't know what to do with myself. I had taken my full dosage of tramadol and paracetamol and NOTHING was helping. I was at my wits end when I phoned NHS 111 at 7pm. The young lady went through my symptoms and advised that she would be sending an ambulance.........the ambulance arrived at 10:55pm......
Once at the hospital I was given morphine to help the pain, which it did but I still had the tingling. I saw a registrar who was surprised I hadn't been tested for MS.....I am now starting to panic. I'm on my own in Queens Hospital which isn't known for it's competencies. He advises that they are keeping me in so at least they can start the ball rolling with trying to help me. I'm wheeled off in my bed to have a CT scan at 2am......I chuckle to myself and ask if they found a brain. The young radiographer smiled back and said "of course". I'm settled into the medical assessment unit. Settled is not really the word for it. There is a young woman on the ward who is clearly distressed and having the screaming heebie geebies and spent the next 5 hours screaming until they moved her to a side room. There is no mobile signal on the ward so my contact with my Rock, Paul, has ceased. Now it's a very lonely time. No windows to look our of and only artificial light. Luckily the lady opposite me has a wicked sense of humour and we hit it off immediately.
I am assessed by another 2 doctors/consultants. There is weakness on my right side including my right lung. A chest x-ray is done at stupid o'clock which shows by chest is clear. The tingling is still intense but the pain is under control. Both doctors perform the trigger point test which sends me through the roof. I react to all 18 trigger points and the doctors give me the diagnosis of Fibromyalgia. SHIT!, this thing doesn't get any better. I am prescribed gabapentin to help with my tremor which has been most noticeable today. They write a note to ask my GP to refer me to physiotherapy and Hydrotherapy to help with mobility and flexibility.....Guess what my GP said?....NO!....he said that if the hospital say I need it then they can refer me. I've kept the note for future reference as basically it all comes down to budgets and my GP hates making referrals....it's not just me, other people who have the same GP say the same about him. The hospital also informed me that they have referred me to their rheumatology department so they can assess if I need to be referred to a neurologist to be checked for MS. I am also waiting for EMG's Nerve Conduction Studies to check the extent of the nerve damage which is causing the extreme tingling. General consensus is I need to have tests to rule out MS which they can't do through A&E.
SO! I don't seem to be having any side effects with the gabapentin. It helps with some o the pain along with the tramadol but it doesn't help with the tingling which is hindering my mobility along with the pain. I feel as though I am walking on dead legs. I stumble more and I struggle getting around. Along with all the other fibro symptoms.....pain, swelling, fatigue, tremor, dry eyes, dry mouth, forgetting my words and struggling with speech amongst others.
All in all it's been a lot to get my head around as we play this waiting game for appointments again.
Woohoo!!! The Festive Season is upon us!!!! I love this time of year. Seeing the magic in my children's eyes makes all the pain worthwhile.
I made our festive cake.....in stages.
I was so touched! It certainly made me smile. To have a friend who understands exactly what you are feeling and going through are worth their weight in gold........or Spoons!!!
Jobs are divied out between the kids so that we can get the house sorted for when Paul's mum, sister and aunt come for a family gathering.
They did a fantastic job setting our festive feasting table!
Even Arthur Bear got in on the act! In the new year I am going to have to get him a mate, Duchess Fibro ;-)
Well! I survived Christmas Day with the help and love of my wonderful family. Boxing Day is going to be spent relaxing...I've written this blog post and that is the most I am going to be able to do. The pain is increasing but the tablets will beat that into submission. Unfortunately I have to live with the extreme tingling and pins and needles as the doctors said they probably won't be able to get rid of it.
Paul is still amazing. Sitting on the sofa last night the tremor in my hands was particularly bad so I put them between my legs so Paul wouldn't notice, but he did....in fact he notices everything. He gently takes my right hand in his and holds it. He doesn't care about the tremor, he just loves me for me. I know he finds it difficult and he doesn't like to see me in pain or struggling but I know he would do absolutely anything for me. We took this selfie last night .......it's us telling Arthritis and Fibromyalgia that they are NOT going to win!
Hope you all had a wonderful and pain free Festive Season.
xxxxxx
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