As I sit here riding out my methotrexate hang over I've just got off the telephone to a representative of Arthritis Research UK as I have been asked if I would like to help out with one of their up coming campaigns. I'm always honoured to take part and help out with this wonderful charity as their research gives people like myself hope for the future.
On the whole I am confident and 'ok' talking about my life, the way it has changed and how I 'cope'. One question floored me today, it was a simple question and one that may children are asked. It was " if you could have one wish, what would it be?" blimey! I felt so silly as I couldn't stop the tears falling from my eyes, tears of memories past and tears for memories that should have been made rolling down my dry pale cheeks. Luckily we were talking by phone so the lady couldn't see me but she knew as my voice cracked with my answer "to be pain free"
It sounds a simple wish but one that I fear can never be granted without the use of strong pain medications. Most people would probably wish for something like a lotto win or an expensive holiday in far flung places, but for me it would be to wake up without pain and stiffness. To walk without crutches or use a wheelchair. To have just one day without pain. It's difficult to remember a time when my body didn't ache beyond words, where joints weren't so stiff I felt my age instead of a old lady and where I didn't battle fatigue for just getting out of bed.
My life is not all doom and gloom and I certainly don't want pity from people. I have these challenges which most people who suffer with autoimmune conditions have but I am not prepared to sit back and not fight some resemblance of normality. Anyhooo.....what is normal anyway?!!!
So far I have survived the school summer jollies with the kids. We have had days out, had picnics, seen air shows, visited family, had meals out interspersed with days of rest and movie days sprawled on the sofa.
Today my new wheelchair has been delivered. I had a pang of sadness as it was wheeled through the door ready to be fitted another day. But then remembered this wheelchair will help me get out and about with less pain, enjoy more days with the family and prevent me from being stuck in the house.
I hope you are enjoying the summer months and are not in too much pain xxx
Monday 17 August 2015
Wednesday 3 June 2015
What Do You See When.......?
What do you see when my husband pushes me in my wheelchair?
Who do you see when you talk over my head to whomever is with me?
What do you see when I stutter and can't get my words out?
What do you see when I slur my words?
What do you see when my hands shake as I pass you the money to pay for something?
What do you see when I stagger and stumble?
What do you see when I struggle to get on a bus?
What do you see when I can't get out of a chair?
What do you see when I use my own cutlery in a restaurant?
What do you see when I ask you to repeat yourself?
What do you see when I pick up carrier bags full of medication from the pharmacy?
What do you see when I have to cancel plans or commitments?
When you look at my husband with pity in your eyes when he pushes me in my wheelchair you fail to see the love and passion he has for me. The rock that holds our relationship together.
When you talk over my head you fail to see the intelligent woman who wants to take part in the conversation.
When you get impatient finishing off my sentences because I stutter and can't get the right words out you don't see the frustration and embarrassment I feel.
When you look at me with disregard assuming I am drunk because I slur my words, stagger or stumble you don't feel the massive wave of fatigue or pain that I am battling every day.
When you laugh or roll your eyes when I struggle to get on the bus you have missed an opportunity to help someone who would appreciate it more than you know.
When you see me struggling to get out of a chair you don't appreciate the struggle to complete the simplest of tasks.
When you snigger at my 'kids cutlery' in the restaurant you don't see the woman who wants to go out with her hubby and family and do the 'normal' things.
When you get narky when I ask you to repeat something you forget that I am missing 60% of my hearing and I am truly interested in what you have to say. I'm not stupid I'm deaf.
When you stare and pass comments about druggies when I collect bags of medication you miss the fact that those meds keep the pain at bay and reduce my immune system to stop this disease attacking my body.
When you say "I knew she wouldn't come" when I reluctantly cancel plans, you don't see the struggle to get out of bed, get dressed, brush my hair, get to wherever we were going....
Look past the disability, the cover on the book. If you spend a little time and read further than the blurb you will see a woman who had hopes, dreams and a career. A woman who has multiple autoimmune illnesses but has achieved a great deal....gained a degree, played in orchestras, ridden horses, travelled, completed marathons, loves to read, loves to learn, loves history, has a passion for raising awareness. A woman who has a wonderful loving and supportive family who don't see the illness or disability. A person who wants to be included but has more challenges than you will ever realise. A person who battles pain, fatigue, grinding joints, dislocating joints, swelling, numbness, deafness, brain fog to name but a few. I still have hopes and dreams but these have changed over time. Look a little deeper and you will see we're not that different after all.
Who do you see when you talk over my head to whomever is with me?
What do you see when I stutter and can't get my words out?
What do you see when I slur my words?
What do you see when my hands shake as I pass you the money to pay for something?
What do you see when I stagger and stumble?
What do you see when I struggle to get on a bus?
What do you see when I can't get out of a chair?
What do you see when I use my own cutlery in a restaurant?
What do you see when I ask you to repeat yourself?
What do you see when I pick up carrier bags full of medication from the pharmacy?
What do you see when I have to cancel plans or commitments?
When you look at my husband with pity in your eyes when he pushes me in my wheelchair you fail to see the love and passion he has for me. The rock that holds our relationship together.
When you talk over my head you fail to see the intelligent woman who wants to take part in the conversation.
When you get impatient finishing off my sentences because I stutter and can't get the right words out you don't see the frustration and embarrassment I feel.
When you look at me with disregard assuming I am drunk because I slur my words, stagger or stumble you don't feel the massive wave of fatigue or pain that I am battling every day.
When you laugh or roll your eyes when I struggle to get on the bus you have missed an opportunity to help someone who would appreciate it more than you know.
When you see me struggling to get out of a chair you don't appreciate the struggle to complete the simplest of tasks.
When you snigger at my 'kids cutlery' in the restaurant you don't see the woman who wants to go out with her hubby and family and do the 'normal' things.
When you get narky when I ask you to repeat something you forget that I am missing 60% of my hearing and I am truly interested in what you have to say. I'm not stupid I'm deaf.
When you stare and pass comments about druggies when I collect bags of medication you miss the fact that those meds keep the pain at bay and reduce my immune system to stop this disease attacking my body.
When you say "I knew she wouldn't come" when I reluctantly cancel plans, you don't see the struggle to get out of bed, get dressed, brush my hair, get to wherever we were going....
Look past the disability, the cover on the book. If you spend a little time and read further than the blurb you will see a woman who had hopes, dreams and a career. A woman who has multiple autoimmune illnesses but has achieved a great deal....gained a degree, played in orchestras, ridden horses, travelled, completed marathons, loves to read, loves to learn, loves history, has a passion for raising awareness. A woman who has a wonderful loving and supportive family who don't see the illness or disability. A person who wants to be included but has more challenges than you will ever realise. A person who battles pain, fatigue, grinding joints, dislocating joints, swelling, numbness, deafness, brain fog to name but a few. I still have hopes and dreams but these have changed over time. Look a little deeper and you will see we're not that different after all.
Thursday 2 April 2015
How to Survive the School Holidays with Arthur.
The school holidays can be fun and exciting for the children but equally tiring and painful (not to mention expensive) for the parents. For children who have parents who suffer with arthritis and other chronic conditions the school holidays won't be as action packed as those children who have healthy parents.
I constantly worry that I am failing my children because I can't do all the activities an able bodied parent can do and that my children are missing out. In the run up to the school holidays myself and my hubby make a plan of what we are going to do and try to space them out so I have a chance to pace myself.......and recover.
Money is an issue for everyone these days. I have recently had my contract terminated due to my ill health. Its not something that has come as a surprise and I have been on 'no pay' since the summer, however it is still something I have got to get my head around. I'm relieved its all over but the sense of financial uncertainty is ever present however this is something that we will overcome by being smart with money, frugal, hunting for bargains and vouchers etc!
Holidays do not have to cost the earth. I saved up for English Heritage membership for hubby and I, with the joint membership we get 6 children for free.......we only have 3 and we don't plan on adding to that number. However, if we went out with friends who had children we could get them (the children) into an event or place on our membership. So far we have paid for our membership through the now free entry to the places we have been to. There are lot of places near us to see, and they have events that are either free or reduced price such as jousting, egg hunts, falconry displays, star gazing etc....Its well worth looking into.
A lot of people now shop at Tesco and have a Clubcard. We save our points/vouchers and exchange them for days out vouchers and meal out vouchers. We have been to places such as: Diggerland, Colchester Zoo and The Tower of London. We've had meals out at places such as ASK, Zizzi and Pizza Express all on the Tesco Clubcard. technically these are free
Many museums in London are free entry. Pack a packed lunch in a rucsac grab a railcard (kids travel free on public transport including buses, over ground trains and tube) and have a fabulous day out.
The following museums are disabled accessible and we have visited and had a great day out:
* The Science Museum
* The Natural History Museum
* The Imperial War Museum
* The British Museum
* The Museum of Childhood
For days when pain and fatigue are rearing their ugly heads....or the weather is being particularly British there are things you can do at home. The following are my favourites:
* DVD and Duvet day.....pop a DVD/film on. Snuggle with the kids on the sofa under a duvet.....they will love it!
* Make up stories.
* Give the kids blankets and cushions to make a fort or a tent or a castle. They will play away to their hearts content while you rest.
* If the weather is ok and you have a patio....chalk to draw on the paving stones. They will love it and it all washes away in the next rain shower (this is England after all!)
* Plant some seeds and the kids can watch them grow. Vegetable seeds can be bought from the 99p shop.
* Colouring pencils, crayons and a supply of paper. Less messy than paint. The kids will love creating pictures and cards for you.
* Make tidying up/chores fun. Kids like to help. Draw up a points/tally chart. The kids can earn points by helping you out around the house. When they reach a certain about of points they get a prize or a treat.
* Get the kids to keep a diary or log of what they have done over the holidays. This way they keep up with their handwriting/spelling practice and they can see that they have had good fun days too.
To keep costs down, and on your better days, meet up at the local park with other mums/dads and the kids friends. I find the playground a struggle and have to go on my mobility scooter or wheelchair but the kids are now nearly 8, 6&6 so push each other on the swings etc. Meeting up with other mums and dads gives you an outing and someone else to chat to. They will more than likely enjoy the chance to have a ground conversation and adult company while the kids play. If the weather is nice, take a picnic.
The main key to surviving the school holidays is:
* Pace yourself.
* Listen to your body.
* Keep on top of your pain medication.
* Rest when you can....DO NOT OVER DO IT!
Until next time, Use your Spoons wisely and have a relatively pain free day
xxxx
I constantly worry that I am failing my children because I can't do all the activities an able bodied parent can do and that my children are missing out. In the run up to the school holidays myself and my hubby make a plan of what we are going to do and try to space them out so I have a chance to pace myself.......and recover.
Money is an issue for everyone these days. I have recently had my contract terminated due to my ill health. Its not something that has come as a surprise and I have been on 'no pay' since the summer, however it is still something I have got to get my head around. I'm relieved its all over but the sense of financial uncertainty is ever present however this is something that we will overcome by being smart with money, frugal, hunting for bargains and vouchers etc!
Holidays do not have to cost the earth. I saved up for English Heritage membership for hubby and I, with the joint membership we get 6 children for free.......we only have 3 and we don't plan on adding to that number. However, if we went out with friends who had children we could get them (the children) into an event or place on our membership. So far we have paid for our membership through the now free entry to the places we have been to. There are lot of places near us to see, and they have events that are either free or reduced price such as jousting, egg hunts, falconry displays, star gazing etc....Its well worth looking into.
A lot of people now shop at Tesco and have a Clubcard. We save our points/vouchers and exchange them for days out vouchers and meal out vouchers. We have been to places such as: Diggerland, Colchester Zoo and The Tower of London. We've had meals out at places such as ASK, Zizzi and Pizza Express all on the Tesco Clubcard. technically these are free
Many museums in London are free entry. Pack a packed lunch in a rucsac grab a railcard (kids travel free on public transport including buses, over ground trains and tube) and have a fabulous day out.
The following museums are disabled accessible and we have visited and had a great day out:
* The Science Museum
* The Natural History Museum
* The Imperial War Museum
* The British Museum
* The Museum of Childhood
For days when pain and fatigue are rearing their ugly heads....or the weather is being particularly British there are things you can do at home. The following are my favourites:
* DVD and Duvet day.....pop a DVD/film on. Snuggle with the kids on the sofa under a duvet.....they will love it!
* Make up stories.
* Give the kids blankets and cushions to make a fort or a tent or a castle. They will play away to their hearts content while you rest.
* If the weather is ok and you have a patio....chalk to draw on the paving stones. They will love it and it all washes away in the next rain shower (this is England after all!)
* Plant some seeds and the kids can watch them grow. Vegetable seeds can be bought from the 99p shop.
* Colouring pencils, crayons and a supply of paper. Less messy than paint. The kids will love creating pictures and cards for you.
* Make tidying up/chores fun. Kids like to help. Draw up a points/tally chart. The kids can earn points by helping you out around the house. When they reach a certain about of points they get a prize or a treat.
* Get the kids to keep a diary or log of what they have done over the holidays. This way they keep up with their handwriting/spelling practice and they can see that they have had good fun days too.
To keep costs down, and on your better days, meet up at the local park with other mums/dads and the kids friends. I find the playground a struggle and have to go on my mobility scooter or wheelchair but the kids are now nearly 8, 6&6 so push each other on the swings etc. Meeting up with other mums and dads gives you an outing and someone else to chat to. They will more than likely enjoy the chance to have a ground conversation and adult company while the kids play. If the weather is nice, take a picnic.
The main key to surviving the school holidays is:
* Pace yourself.
* Listen to your body.
* Keep on top of your pain medication.
* Rest when you can....DO NOT OVER DO IT!
Until next time, Use your Spoons wisely and have a relatively pain free day
xxxx
Monday 16 March 2015
No Pain no Gain
Last week saw me having a physio appointment on Wednesday where the therapist treated me with ultrasound and acupuncture. TBH I didn't feel anything while these therapies were taking place. Thursday was the day I was pinning hopes of extensive pain relief on.
When I was told I was going to have facet injections and sacral-iliac injections I initially thought "how bad can that be?" .....Oh how wrong was I. I didn't realise that I would have to go in to hospital on the day unit and be taken to theatre for them to be administered. SO! Thursday morning I do as the letter advised and had a light breakfast, clear fluids up until 11am then nil by mouth. Paul is at work until 1pm so I went to the hospital on my own using the wheelchair. Paul was to pick me up after the procedure. I don't have a long wait to be shown to a trolley to wait for the consultant to come along, explain the procedure, the possible complications and for me to sign the consent form.
By the time the porter comes to take me to theatre I am sporting the latest in NHS fashion...the fabulous rear tied gown and I am thinking about having a bacon buttie because it is now 5pm, my stomach thinks my throat has been cut and I'm in need of sustenance including a large cup of coffee.
It is noticed that I haven't been fitted with a cannula. 3 nurses, 1 doctor and 5 attempts later the cannula to administer pain relief is finally fitted. I'm trying to find the funny side at this point as the nerves are beginning to kick in. As I am laid on the table on my front with all my back and rear exposed I start chuckling to myself. When asked what is so funny, I replied "all I can hear in my head is the song 'I saw the whole of the moon'" it got a chuckle from the nursing staff. I am thankful that all the staff including the Dr had great senses of humour.
Because my hearing is pretty poor, I was allowed to wear my hearing aids in theatre, however because of the amount of machinery in there the hearing aids were whistling. There was a nurse who could sign a bit too. She sat by my head and when the Dr spoke she relayed it to me so I could hear her and lip read. It was such a thoughtful act and made me feel at ease. Not being able to hear when something is happening to you can be very disorientating and upsetting.
The first injections are the sacral-iliac ones....two of them....for those of you less familiar with the spine, these joints are at the bottom near your bottom. The area is numbed with local anaesthetic. I like to think I have a high pain threshold but this was something else. Not wanting to move or flinch while the needles are being inserted was really hard I ended up biting the pillow and there may have been the odd swear word.....I did apologise for the language after to be told they have heard much worse! The Dr said "No pain, No Gain!" The 6 facet injections came next. After the sacral-iliac ones these were a breeze!
Following the procedure I am taken back to the day unit with a blinding headache. Waiting for me was a cup of coffee and a sandwich. It tasted so good!
After an hour a nurse comes to help me get dressed. Here's me thinking that's probably the one thing I can do today as I had brought comfortable clothing. Nope! I stood up and promptly fell on the floor. The lovely nurse laughed and said "That is exactly why I am here" I did say did she want to take a picture and post to social media and have a chuckle before she helped me up. We were both laughing a lot. That's exactly what got me through the injections....my sense of humour and the humour of the Dr and nursing staff. If you don't laugh you will cry.
The feeling came back in my legs over night although I still have some weakness in my right leg. My sciatica is a lot better and I am waiting to see if my pain is significantly reduced over the coming weeks. I have 8 black and blue bruises of varying sizes up my back. The injections apparently have a 1:3 chance of working, if they don't, I can have the nerve burnt. The injections don't last forever and they will wear off. .....hence the No Pain, No Gain. If they work it will be worth it. The thing with living with a chronic condition is you will try almost anything to get some relief from the constant pain.
I can't praise Queens Hospital Day Unit, the nursing staff and Dr Huntly enough. It's not a pleasant experience but they really put me at ease and even managed to get me through the injections still laughing at the end of it. One nurse even said see you again soon......I'm hoping not that soon, but knowing the care was good makes the thought of having to go through it all again in the future a bit easier.
Wishing you all a relatively pain free week. Use your spoons wisely
xxxx
When I was told I was going to have facet injections and sacral-iliac injections I initially thought "how bad can that be?" .....Oh how wrong was I. I didn't realise that I would have to go in to hospital on the day unit and be taken to theatre for them to be administered. SO! Thursday morning I do as the letter advised and had a light breakfast, clear fluids up until 11am then nil by mouth. Paul is at work until 1pm so I went to the hospital on my own using the wheelchair. Paul was to pick me up after the procedure. I don't have a long wait to be shown to a trolley to wait for the consultant to come along, explain the procedure, the possible complications and for me to sign the consent form.
By the time the porter comes to take me to theatre I am sporting the latest in NHS fashion...the fabulous rear tied gown and I am thinking about having a bacon buttie because it is now 5pm, my stomach thinks my throat has been cut and I'm in need of sustenance including a large cup of coffee.
It is noticed that I haven't been fitted with a cannula. 3 nurses, 1 doctor and 5 attempts later the cannula to administer pain relief is finally fitted. I'm trying to find the funny side at this point as the nerves are beginning to kick in. As I am laid on the table on my front with all my back and rear exposed I start chuckling to myself. When asked what is so funny, I replied "all I can hear in my head is the song 'I saw the whole of the moon'" it got a chuckle from the nursing staff. I am thankful that all the staff including the Dr had great senses of humour.
Because my hearing is pretty poor, I was allowed to wear my hearing aids in theatre, however because of the amount of machinery in there the hearing aids were whistling. There was a nurse who could sign a bit too. She sat by my head and when the Dr spoke she relayed it to me so I could hear her and lip read. It was such a thoughtful act and made me feel at ease. Not being able to hear when something is happening to you can be very disorientating and upsetting.
The first injections are the sacral-iliac ones....two of them....for those of you less familiar with the spine, these joints are at the bottom near your bottom. The area is numbed with local anaesthetic. I like to think I have a high pain threshold but this was something else. Not wanting to move or flinch while the needles are being inserted was really hard I ended up biting the pillow and there may have been the odd swear word.....I did apologise for the language after to be told they have heard much worse! The Dr said "No pain, No Gain!" The 6 facet injections came next. After the sacral-iliac ones these were a breeze!
Following the procedure I am taken back to the day unit with a blinding headache. Waiting for me was a cup of coffee and a sandwich. It tasted so good!
After an hour a nurse comes to help me get dressed. Here's me thinking that's probably the one thing I can do today as I had brought comfortable clothing. Nope! I stood up and promptly fell on the floor. The lovely nurse laughed and said "That is exactly why I am here" I did say did she want to take a picture and post to social media and have a chuckle before she helped me up. We were both laughing a lot. That's exactly what got me through the injections....my sense of humour and the humour of the Dr and nursing staff. If you don't laugh you will cry.
The feeling came back in my legs over night although I still have some weakness in my right leg. My sciatica is a lot better and I am waiting to see if my pain is significantly reduced over the coming weeks. I have 8 black and blue bruises of varying sizes up my back. The injections apparently have a 1:3 chance of working, if they don't, I can have the nerve burnt. The injections don't last forever and they will wear off. .....hence the No Pain, No Gain. If they work it will be worth it. The thing with living with a chronic condition is you will try almost anything to get some relief from the constant pain.
I can't praise Queens Hospital Day Unit, the nursing staff and Dr Huntly enough. It's not a pleasant experience but they really put me at ease and even managed to get me through the injections still laughing at the end of it. One nurse even said see you again soon......I'm hoping not that soon, but knowing the care was good makes the thought of having to go through it all again in the future a bit easier.
Wishing you all a relatively pain free week. Use your spoons wisely
xxxx
Thursday 5 March 2015
Google is NOT always your best friend!
The thing with having a chronic illness and taking many different medications to control/suppress/relieve symptoms is you read on the internet the side effects and what your symptoms *could* be .......bad, Bad BAD move!! By the time you have read all the possibilities that the internet has fired back at you, you have convinced yourself that you have something that is going to kill you pronto!
There are many places on the internet where you can get correct advice on your illness and the medications to treat it. Arthritis Research UK http://www.arthritisresearchuk.org/ has a wealth of information on the 200+ forms of arthritis, the diagnosis procedure and the many treatments. They also have tips and advice on how to manage and live you life.
I get increasingly annoyed when I hear or read advice which is basically scaremongering. The ONLY person you should be consulting about your medications is a health care professional, whether that would be your GP, Consultant or Pharmacist. People get information wrong and taking advice from someone who is not qualified can be dangerous. The other thing is the amount of people who feel the need to give advice for faddy trending diets as "try drinking aloe vera".....YUK!!! "try going on a juicing diet" they swear that they will cure you and that you will be pain free and have your old life back. There is no medical research that proves this. BUT if it works for you, fantastic, but please don't give me the hard sell for something I can not afford to buy.
Now I've got that off my chest I can update you on my creaky life!
I found a lump in my neck/shoulder in November. Its getting increasingly bigger and my neck aches to the point of distraction. I have finally got an appointment for an ultrasound on 22nd March...yes that will be a Sunday. The doctor wants to check if it is an enlarged lymph node. This lump is hard, solid and unmoveable. Hopefully I don't have to wait long for the results. It is possible that it is a calcification due to my RA, keep your fingers crossed please.
I have a busy week next week....physio .....to keep my joints moving and my muscles from wasting, then spinal injections under sedation and x-ray. I have to say I am not looking forward to injections but if it gives me a number of months pain free (would be ideal) or more realistically reduces my back pain it has to be worth it. Apparently it takes a few weeks for the injections to kick in and do their stuff and I will feel bruised after the procedure.
I'm very lucky to have a fabulous support network. I am aware that people don't necessarily have an understanding support network. I put together a short video which is an alternative to the Spoon Theory which is used to explain chronic illness. Here is the link. https://www.facebook.com/TheInvisibleChallenge/videos have a watch, like and share. I have had a lot of good comments and messages saying that it has helped them and they have shown it to family members and friends.
Here are a list of excellent social network support groups:
Fibromyalgia : UK Fibromyalgia Friendly Group https://www.facebook.com/groups/1571405076449852/
Sjogrens Syndrome: https://www.facebook.com/groups/454589521294750/
Rheumatoid Arthritis: Rheumatoid Arthritis Wonky Club https://www.facebook.com/groups/1522768504613735/
Rheumatoid Arthritis in the UK https://www.facebook.com/groups/2410482794/
Save our Spoons https://www.facebook.com/groups/SaveOurSpoons/
Rheumatoid Arthritis (RA) Squeaky Joints https://www.facebook.com/groups/squeakyjoints/
Arthritis and Fibromyalgia Chat Group https://www.facebook.com/groups/165181077006636/
Being in a support group online gives you support from people who are going through exactly what you are going through. These groups have had a positive influence in my life and keep me positive. I also run The Invisible Challenge https://www.facebook.com/TheInvisibleChallenge which I use to spread positivity, break down barriers and negativity surrounding living with an invisible illnesses. I post positive pictures, videos and advice including links to information.
Today I have posted a spoon selfie #spoonselfie have a look on FB and Twitter for Save our Spoons, you'll find my selfie too :-)
Until next time
Use your spoons wisely and stay pain free xxxx
There are many places on the internet where you can get correct advice on your illness and the medications to treat it. Arthritis Research UK http://www.arthritisresearchuk.org/ has a wealth of information on the 200+ forms of arthritis, the diagnosis procedure and the many treatments. They also have tips and advice on how to manage and live you life.
I get increasingly annoyed when I hear or read advice which is basically scaremongering. The ONLY person you should be consulting about your medications is a health care professional, whether that would be your GP, Consultant or Pharmacist. People get information wrong and taking advice from someone who is not qualified can be dangerous. The other thing is the amount of people who feel the need to give advice for faddy trending diets as "try drinking aloe vera".....YUK!!! "try going on a juicing diet" they swear that they will cure you and that you will be pain free and have your old life back. There is no medical research that proves this. BUT if it works for you, fantastic, but please don't give me the hard sell for something I can not afford to buy.
Now I've got that off my chest I can update you on my creaky life!
I found a lump in my neck/shoulder in November. Its getting increasingly bigger and my neck aches to the point of distraction. I have finally got an appointment for an ultrasound on 22nd March...yes that will be a Sunday. The doctor wants to check if it is an enlarged lymph node. This lump is hard, solid and unmoveable. Hopefully I don't have to wait long for the results. It is possible that it is a calcification due to my RA, keep your fingers crossed please.
I have a busy week next week....physio .....to keep my joints moving and my muscles from wasting, then spinal injections under sedation and x-ray. I have to say I am not looking forward to injections but if it gives me a number of months pain free (would be ideal) or more realistically reduces my back pain it has to be worth it. Apparently it takes a few weeks for the injections to kick in and do their stuff and I will feel bruised after the procedure.
I'm very lucky to have a fabulous support network. I am aware that people don't necessarily have an understanding support network. I put together a short video which is an alternative to the Spoon Theory which is used to explain chronic illness. Here is the link. https://www.facebook.com/TheInvisibleChallenge/videos have a watch, like and share. I have had a lot of good comments and messages saying that it has helped them and they have shown it to family members and friends.
Here are a list of excellent social network support groups:
Fibromyalgia : UK Fibromyalgia Friendly Group https://www.facebook.com/groups/1571405076449852/
Sjogrens Syndrome: https://www.facebook.com/groups/454589521294750/
Rheumatoid Arthritis: Rheumatoid Arthritis Wonky Club https://www.facebook.com/groups/1522768504613735/
Rheumatoid Arthritis in the UK https://www.facebook.com/groups/2410482794/
Save our Spoons https://www.facebook.com/groups/SaveOurSpoons/
Rheumatoid Arthritis (RA) Squeaky Joints https://www.facebook.com/groups/squeakyjoints/
Arthritis and Fibromyalgia Chat Group https://www.facebook.com/groups/165181077006636/
Being in a support group online gives you support from people who are going through exactly what you are going through. These groups have had a positive influence in my life and keep me positive. I also run The Invisible Challenge https://www.facebook.com/TheInvisibleChallenge which I use to spread positivity, break down barriers and negativity surrounding living with an invisible illnesses. I post positive pictures, videos and advice including links to information.
Today I have posted a spoon selfie #spoonselfie have a look on FB and Twitter for Save our Spoons, you'll find my selfie too :-)
Until next time
Use your spoons wisely and stay pain free xxxx
Friday 27 February 2015
Creaky Coping Mechanisms
People often don't realise the extent of the challenges RA, Fibro, OA and deafness can pose to people who have this diseases. I get the usual comments of "you look well", "you're not old enough to have arthritis", "I've got a touch of that, you should take....."
I like to think of myself as a positive person but don't get me wrong, I have those days when I just hurt too much, I'm too stiff, I'm unstable so lock myself away in the house and people don't see me for days. Everyone has their own coping mechanisms to cope with the pain, the frustrations and the practicalities of having a super stiff and wonky body. Here are just a few of mine:
I have a wonderful hubby, kids and a select circle of friends that I can rely on to cheer me up, remind me that other people have a worse time, help me out, bring emergency care packages, take me out for a coffee and cake so I get out the house (thanks Steph :-) ) The day to day grind of living with any form of arthritis or fibromyalgia throws so many challenges from getting up and dressed to going to bed in the evening.
Just getting out of bed is a challenge. I have to grab the headboard to lift myself up a bit and hubby then helps with the manoeuvring out of bed. I take long deep breaths when the pain burns or smarts. of course I take my pain medication daily and my DMARDS (Disease Modifying Anti Rheumatic Drugs) but sometimes that pain breaks through like someone wielding a baseball bat that it takes your breath away, you panic, feel sick, cry.....by controlling my breathing I can try and control the pain.
Hot water bottles and wheat bags! ...these are my very best friends on unbearable days. They help with the pain and the swelling. I have a paraffin wax bath for my hands and feet.....its fab! My physio recommended I invested in one so it was my Christmas present to my self last year. The warm wax coats your hands (or feet) the warmth penetrates deep into the joints easing pain and stiffness.
Jars, tins, bottles etc .....imaging your hands being so stiff and painful you can't even hold a fork or toothbrush, let alone open a tin or bottle. I hate this because I feel so damned useless. There have been many times I have dropped something, not been about to grip something. Usually it end up with me being so frustrated it reduces me to tears. These are simple tasks that my 34 year old hands should be able to do. SO! we have a battery operated tin opener. It clips on the top, press the large button and it opens the tin....how cool is that??! I know...you're reading this and think "you're mad" but just having a gadget that makes things just a tad easier is like getting a birthday present.
I wear clothing that has a pocket in it so I can carry my mobile phone with me even in the home. My mobile has a T setting and is compatible with my hearing aids. This proved to be worth its weight in gold when I took a flying lesson down the stairs a few weeks ago. The flying bit wasn't a problem and Grendel my Owl would probably be proud of my efforts considering I don't have wings and my arms and shoulders are riddled with arthritis. However, I certainly haven't mastered the art of landing. Once I had stopped crying (sort of) from the shock and pain and I realised that I couldn't actually move off the cold tiled floor, I phoned the school reception and asked if they could get a message to Paul to come and help me. Paul was home within 10 mins, did a quick assessment which involved me screaming and using a few words which can't be published here. Ambulance is phoned and it takes them over half an hour to get to me. I'm gently put on a spinal board and strapped in. The paramedic has a wicked sense of humour thankfully but the prospects of possibly having a fractured spine is a sobering thought. Luckily I was just badly bruised and have a number of herniated discs. Another coping mechanism is humour.....the paramedic put me at ease, his sense of humour was similar to mine. I like to laugh and find the funny side of things. I laugh at myself because its easier than people laughing at me. I have a freedom pass (my creaky pass) and a blue badge....it has been know to be called my cripple badge lol!
Being positive and seeing the positive in a challenging situation helps me to cope with the life I am living. And I am living it. I refuse to give up. I need to keep going because my kids need me to keep going. I write this blog as a coping mechanism. I helps me get things off my chest and understand my situation. If my situation can help just one person know that they aren't alone then I have done well. I have a page on Facebook called The Invisible Challenge. Its about breaking down barriers and misconceptions. It posts links, help links and positive posts to uplift people. Here is the link if you want to have a look, like and share! https://www.facebook.com/TheInvisibleChallenge I also do videos to raise awareness. here is a few links to look at and watch:
The alternative spoon theory https://www.facebook.com/TheInvisibleChallenge/videos
Invisible Diseases Vlog https://www.youtube.com/watch?v=7g5lFfE2CAc
Spread The Word, Be a Pain Killer! https://www.youtube.com/watch?v=8BryN1jIPPg
Keep smiling and use your spoons wisely xxx
I like to think of myself as a positive person but don't get me wrong, I have those days when I just hurt too much, I'm too stiff, I'm unstable so lock myself away in the house and people don't see me for days. Everyone has their own coping mechanisms to cope with the pain, the frustrations and the practicalities of having a super stiff and wonky body. Here are just a few of mine:
I have a wonderful hubby, kids and a select circle of friends that I can rely on to cheer me up, remind me that other people have a worse time, help me out, bring emergency care packages, take me out for a coffee and cake so I get out the house (thanks Steph :-) ) The day to day grind of living with any form of arthritis or fibromyalgia throws so many challenges from getting up and dressed to going to bed in the evening.
Just getting out of bed is a challenge. I have to grab the headboard to lift myself up a bit and hubby then helps with the manoeuvring out of bed. I take long deep breaths when the pain burns or smarts. of course I take my pain medication daily and my DMARDS (Disease Modifying Anti Rheumatic Drugs) but sometimes that pain breaks through like someone wielding a baseball bat that it takes your breath away, you panic, feel sick, cry.....by controlling my breathing I can try and control the pain.
Hot water bottles and wheat bags! ...these are my very best friends on unbearable days. They help with the pain and the swelling. I have a paraffin wax bath for my hands and feet.....its fab! My physio recommended I invested in one so it was my Christmas present to my self last year. The warm wax coats your hands (or feet) the warmth penetrates deep into the joints easing pain and stiffness.
Jars, tins, bottles etc .....imaging your hands being so stiff and painful you can't even hold a fork or toothbrush, let alone open a tin or bottle. I hate this because I feel so damned useless. There have been many times I have dropped something, not been about to grip something. Usually it end up with me being so frustrated it reduces me to tears. These are simple tasks that my 34 year old hands should be able to do. SO! we have a battery operated tin opener. It clips on the top, press the large button and it opens the tin....how cool is that??! I know...you're reading this and think "you're mad" but just having a gadget that makes things just a tad easier is like getting a birthday present.
I wear clothing that has a pocket in it so I can carry my mobile phone with me even in the home. My mobile has a T setting and is compatible with my hearing aids. This proved to be worth its weight in gold when I took a flying lesson down the stairs a few weeks ago. The flying bit wasn't a problem and Grendel my Owl would probably be proud of my efforts considering I don't have wings and my arms and shoulders are riddled with arthritis. However, I certainly haven't mastered the art of landing. Once I had stopped crying (sort of) from the shock and pain and I realised that I couldn't actually move off the cold tiled floor, I phoned the school reception and asked if they could get a message to Paul to come and help me. Paul was home within 10 mins, did a quick assessment which involved me screaming and using a few words which can't be published here. Ambulance is phoned and it takes them over half an hour to get to me. I'm gently put on a spinal board and strapped in. The paramedic has a wicked sense of humour thankfully but the prospects of possibly having a fractured spine is a sobering thought. Luckily I was just badly bruised and have a number of herniated discs. Another coping mechanism is humour.....the paramedic put me at ease, his sense of humour was similar to mine. I like to laugh and find the funny side of things. I laugh at myself because its easier than people laughing at me. I have a freedom pass (my creaky pass) and a blue badge....it has been know to be called my cripple badge lol!
Being positive and seeing the positive in a challenging situation helps me to cope with the life I am living. And I am living it. I refuse to give up. I need to keep going because my kids need me to keep going. I write this blog as a coping mechanism. I helps me get things off my chest and understand my situation. If my situation can help just one person know that they aren't alone then I have done well. I have a page on Facebook called The Invisible Challenge. Its about breaking down barriers and misconceptions. It posts links, help links and positive posts to uplift people. Here is the link if you want to have a look, like and share! https://www.facebook.com/TheInvisibleChallenge I also do videos to raise awareness. here is a few links to look at and watch:
The alternative spoon theory https://www.facebook.com/TheInvisibleChallenge/videos
Invisible Diseases Vlog https://www.youtube.com/watch?v=7g5lFfE2CAc
Spread The Word, Be a Pain Killer! https://www.youtube.com/watch?v=8BryN1jIPPg
Keep smiling and use your spoons wisely xxx
Monday 23 February 2015
Blood Tests and Talks
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
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
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