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 :-)
Thursday 27 February 2014
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
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