Survived Christmas with a Chronic Illness?

Have you survived the festive season? Me neither. RA reared it's ugly head putting a massive dampener on my festive spirit. We have had a number of difficult Christmas's and this one has been up there as far as fighting the relentless Arthur.

Arthur decided it was partying hard in my body on 23rd December and it's still not stopped. Horrendously painful joints, raging temperature which lead to nausea and vomiting and relentless fatigue. Christmas eve was spent sleeping in a haze of pain relief before putting my big girls pants on, sucking it up and pasting the smile on my face for the sake of our 3 beautiful children as we head out to the cinema.

I ease myself into the comfy cinema seats, the lights dim and I fight fatigue to stay awake. Thankfully the film was rather funny. Hubby has to lift my stiff and creaky body out of the chair, I take more medication and head off to a friends house for our annual Xmas eve gathering. We're lucky enough to have wonderful friends who do understand but still I don't want the evening to be about my condition.

Xmas day arrives with excited children.  Their laughter, energy, enthusiasm and love gets me through the day. We visit Pauls beloved mother in her care home first thing. No matter how bad things get I am thankful I am still able to live in my own home.

Friends arrive for festive dinner and we graze on copious amounts of food and merriment but by 5pm I'm fading fast. Our friends leave and I'm snuggled in fleecy jammies and a quilted duvet. For one day of fun and enjoyment I'm paying the price of pain, stiffness and fatigue. I thought I had fooled those around me but the concerned look in my hubby's eyes says it all....I haven't.

I've been waiting since August for facet joint injections and hip injections. Basically the dashing Dr Huntley sticks enormous needles into my back and hips guided via x-ray to inject steroids to reduce inflammation and help ease some of my pain. The NHS is a wonderful thing and I'd be a complete wreck without it but .....there's always a but,  and I don't want to sound ungrateful,  but I'm no longer coping with back, pelvic and hip pain. My right hip is subluxing (proper term for partial dislocation) which bloody well hurts like a massive hurty thing yet the registrar at Stanmore has said I need 6 months anti TNF therapy before he'd consider surgery which is contradictory to the previous registrar I saw. Im waiting for anti TNF injections to be delivered. My rheumy okayed them a couple of weeks or so ago and now its int the hands of a medical company. You can see how confusing and frustrating this can be.....hugely long waiting times for procedures that patch me up to mask the issue so I can keep plodding onwards in an attempt to be a mother and wife and also contradicting information from a registrar at one of the top orthopaedic hospitals in the country. Needless to say various messages have been left at Queens Hospital and Stanmore to find out a state of play before I become completely sofa bound.  Then to top it off my smart crutches have broken. These amazing crutches have been a godsend for the last 3-4 years even supporting me on various media pieces and trips to the Houses of Parliament to raise awareness of Arthritis, all invisible conditions and disabilities. Now starts the saving up of the £100 to replace them, it's a lot of money but so worth it.

This picture by lupie linda sums up the situation. I don't have Lupus but the statements fit all autoimmune diseases and chronic illnesses. We all put on the mask to prevent those around us seeing the true pain, frustrations, loneliness of battling these diseases/conditions.

As 2017 comes to a close I wish you all a pain free, healthy and happy 2018 filled with love and friendship.

The Elephant in the Room

Being disabled and a wheelchair user I often find that people see my disability rather than the person I am and what I can contribute to society. Over the years I've had people talk about me to my husband or my friends while I'm actually sat there. Assuming that my disability is compromising more than just my ability to move without pain and falling over. How rude is that?  I have been known to comment that my mind is sharp and my tongue sharper. Often the comment goes over their heads. I've also had people question my ability as a leader in the Scout movement because of my disability. I was annoyed by this as the person concerned should have known better, and you know what? I proved them wrong. I'm a great leader,  I write a fantastic programme with the leaders of our beaver colony. Parents often compliment us on what we do for the young people. I've had issues with accessibility which resulted in me not being able to take part. I was hurt and angry as it still seems the elephant in the room is my disability and my wheels instead of legs. It raised questions about inclusion and accessibility which are 2 subjects I am extremely passionate about.

Since the negative situations arose positive steps have been made and my opinion was asked. ....only at group level but that's the front line level where I can help make scouting more accessible for leaders and more importantly young people who are differently abled,  after all scouting is for all regardless of ability or financial constraints.

Fast forward to this weekend. I'm a County Beaver Leader , a role which I'm proud of. It enables me to support districts and leaders across the whole of a county. I attended a programme forum and how people in middle management roles and higher can support the leaders on the front line delivering these amazing opportunities for young people. For once my disability wasn't an issue. People spoke to me.....yes! You have no idea how good that made me feel. On workshops which involved moving around to speak to other people and form groups,  people came to me. I was included,  not ignored and my opinion was valued.  I came away having met new people with the same interests and passions and with ideas that I can take back to the teams I am part of.

Great things can happen when people see past the obvious,  get to know the person. You never know that person may be able to bring skills, and opinion, a different and valued view point to the table.

I'd love to be able to use my experiences and knowledge to make inclusion and accessibility second nature so that more young people and adults with challenges from  physical disabilities to learning challenges can enjoy scouting and gain new skills  and experiences.

Remember. ....not disabled just differently abled. 

(Disclaimer : these are my own views and not those of the organisations I am part of)

Breakfast at Parliament

Today started at 6am for me when the alarm went off for me to get ready to attend a meeting at the houses of parliament about multi-morbidities and mental health. Putting it simply it was about how long term health conditions affect mental health and how research and support can be improved.

For me mornings are difficult, just getting out of bed is a struggle with stiff and painful joints but I felt it was important for me to attend today and share my story and experience.  Living with long term health conditions definitely affects our mental health but there is little support available or sufferers are not told of any help available.

The event was well attended despite it being early and with other events happening at the same time . I met some amazing and inspirational people including a couple who spoke about their experiences of how Parkinsons Disease and the medication had affected their mental health and the mental health of everyone in their family. You see its a vicious circle. Living with a long term and painful condition like Rheumatoid Arthritis, Fibromyalgia, Ehlers-Danlos Syndrome (the list is endless) affects how we feel mentally. Many sufferers battle depression and severe mood swings. Medication can cause depression too. We're frustrated and angry and upset and this also has an inpact on those closest to us, our loved ones, partners and children.

When you're diagnosed with a long term condition you see a specialist or a group of specialist's but at no point are you asked how you feel, or are coping, or how the diagnosis affects those around you.  My gorgeous now 9 year old son lives with chronic pain.  He has had some really difficult times where he's trying to understand what's happening to him, the frustrations and anger. His mood is up and down. One minute he's my happy smiley boy and the next he's teary or frustrated and snappy. I've explained to our gp, his paediatrician and physiotherapist but no one has offered help or pointed us in the right direction to get help. The school referred him to a home school support worker and he had 5 or 6 sessions with her but that was it. There was no coping mechanisms or support for parents to support our child.

My experience is similar to my son's. I get frustrated and feel 'down' about my situation, my condition and the fact it's a life long condition. I'm not going to get better, I've got to learn to manage it and I will continually learn to cope. I know my condition  and my moods affect those closest to me. When I'm in so much pain I can't get out of bed, when I'm wrapped up in a blanket and crying, when I snap at my loved ones for not understanding, when medications cause mood swings from highs where the Meds are helping to the deep lows when you're weaned of steroids or certain pain relief because it's not good to be on them long term. I feel it's important that when a person is diagnosed with a long term condition that support is available for those people in respect of their mental health and coping mechanisms.

I do try to practice mindfulness and meditation.  With all my children  we tell day stories about our day before bed time but we make a point of saying the positives and there has to be  at least 3 positive things. It doesn't matter how small these things are as long as they are positive. Some days my positive is that I got dressed in the morning or I managed to brush my hair. They're still positives and still achievements.  Today my achievements are massive
1) I went to the houses of parliament
2) I spoke about my experiences to hopefully make a difference for other people
3) I snuggled on the sofa with my 3 amazing children and hubby.

I'd like to thank Arthritis Research UK for the opportunity to attend this mornings breakfast meeting. Being involved and trying to make a difference raising awareness helps me. I feel useful where arthritis and pain has taken so much away from me.

Let me know your 3 positives

When Wonkies Meet

I'm a member of the most amazing online support group. The members have literally picked me up from the darkest depths of despair, through tests, diagnosis', hospital admissions and operations. They have also been there in joyous times and provided much laughter. A fabulous part of being a member of this group is the ability to meet up with fellow members. People that understand,  "get me" and don't stare at the sheer wonkiness of wheelchairs,  crutches,  walking sticks, special cutlery and splinted joints. Today was one such day.

When Wonkies meet there will be gentle hugs of epic proportions. Laughter where tears of happiness not pain roll down our cheeks from our eyes, a complete understanding of the challenges faced by a body fighting RA. No judging or staring. Together we are normal, Wonky Normal.

Thank you once again to the Wonkies for love,  kindness, support, understanding and laughter.

Every person battling or caring for someone with an invisible illness like Rheumatoid Arthritis needs to find an amazing support group you'll find friends for life that become family.

World Arthritis Day, Live it 24/7 365

Today is World Arthritis Day. 12th October. For me it's the same as 11th October and 13th October will be the same. Like many, I live with arthritis 24/7 365 days a year. Today started pretty much like every other day. I'm awake long before the alarm has gone off for the kids to get up and out to school. My joints are as stiff as the Tin Man from Oz who hasn't been oiled for years and I have a searing pain in my back, hips and neck (other joints are joining the party but haven't woken up yet) I'm stuck on my back unable to move just like a tortoise flipped over onto its shell. It means I've started my day 1) in pain 2) tired 3) frustrated 4) did I mention pain?

Thankfully my lovely hubby gently helps by manoeuvring my legs and lifting me up to a seated position to get my baring's  and stop the room from spinning (its like having a hangover without any of the fun and alcohol the night before) he then lifts me to a standing position and gives me my sticks. I'm finally up but by no means ready to face the day. This is just the first part of my daily routine followed by medications, help washing and dressing and giving the kids a kiss as they head off to school for the day leaving me alone with my thoughts, frustrations, loneliness and cats.

Here is a short video I did a couple of years ago about living with arthritis https://www.youtube.com/watch?v=E7vPJGjMzAo

Having any Invisible illness (I have a few...not greedy just a game of autoimmune bingo, you have one and they bring their friends and family to your body to party) is incredibly isolating. People look at me and tell me I look well, I'm too young to have arthritis .....tell that one to my 12 year old self  25 years ago!! I often get comments such as "my nan has arthritis" or "have you tried (insert magic cure)"

When you have a chronic illness or disability you find out who your true friends are. I find  have to cancel plans due to pain and fatigue or hospital appointments. Some people don't understand that you are unable to  meet up at a certain time at a certain place. Invitations to meet up or go places dry up and people stop calling. Real friends send a text to say "how are you?" or "I know you don't feel great at the moment, do you need anything?" Real friends don't take the "I'm Fine" reply at face value. I don't like to complain about the extent of my pain and struggles as I feel people don't understand. I'm self conscious and worry people are rolling their eyes at me or classing me as a moaner or someone after sympathy and pity. I know a lot of people battling chronic pain conditions feel the same so we put on the mask and smile and say "I'm Fine" but we're not fine.

A few months ago I took part in a video for Arthritis Research UK please have a watch and share.  Here's the link  https://www.youtube.com/watch?v=bWS6cvxF280

So this World Arthritis Day, spare a thought for the children fighting for some sort of normality and childhood, the younger people wanting a career, the older people struggling, you see the many forms of arthritis (there are about 200) don't discriminate on age, race or gender. It can and does affect anyone of an age. Its frustrating, isolating, painful.

Patient Transport, Frustrations and Cancellations.

I don't know about you but I need to psych myself up for certain appointments and procedures. Today was one of those days. I was due to have an arthrogram of my hip (where they guide the mother of all needles into the joint space guided by x-ray to inject dye) followed by an MRI of my hip and lumbar/sacral spine. The needle bit doesn't really bother me. I've got used to being a pin cushion over the years. It's the giant polo mint, louder than an industrial tumble drier, that's the problem. Laying on my back is incredibly painful and I end up being stuck like a tortoise rocking side to side on its shell with relentless stabbing muscle spasms. Fun eh?

I use patient transport. Its not ideal as journeys can be long as the drivers pick up a number of patients to take them to the hospital for their appointments. Usually, priority is given to transport patients as they could be late due to delays on the roads. Today I psyched myself up for the long journey to the specialist orthopaedic hospital by ambulance. My patch that delivers slow release pain relief is removed as they can't be worn in the giant polo which means my pain levels are increasing like the raising tide. The time that the ambulance is due comes and goes. A call to the booking line informs me that there is traffic but they are on the way and they will call the hospital to explain.

Eventually the ambulance arrives leaving 40 minutes to get all the way round the glorious M25 (you and I both know that it would take a minor miracle to make my appointment) Before I am wheeled on board I use the initiative to ask if my procedure is actually going to go ahead as we don't stand a hope in the proverbial hot place of getting there on time. Yep! You've guessed it, the appointment is cancelled. This is actually the second time this appointment has been cancelled....the first time because of staffing issues at the hospital and this time because transport are unable to transport.

A bit of digging and me losing my cool with tears stinging my face, I find that the first crew were assigned in the morning but had mechanical issues, a second crew were assigned but I have no idea why they couldn't make it, the third crew were dispatched from Stanmore at 1:15pm when I was supposed to be picked up at 1.30pm. Even if Superman were driving he would have had great difficulty in doing the usual 1 hour drive in 15 minutes. When I spoke to x-ray the appointments lady spoke to me in the most condescending tone implying that I was less than intelligent. I've actually had this procedure done before so I pretty much know the running order. I was so frustrated and upset that I ended up hanging up the phone call when they said that they would call Monday with an appointment but couldn't guarantee I wouldn't have an other 5-6 week wait.

I compose myself, put my big girl pants on and try and call the switchboard number to try and speak to PALS (patient advice and liaison service) to try and work out a way forward. The call just rang out. At my wits end I resorted to social media and a tweet to the hospital meant a response in minutes. Why is it that you get absolutely nowhere until you use a public platform? My lengthy complaint is now in the hands of PALs although they can't guarantee I won't have another 5-6 week wait (will bring the length of time to 4 months wait for an arthrogram and MRI) They will be contacting me on Monday morning before I head off to Westminster for a Parliamentary Reception to talk about my experiences of living with arthritis and the challenges I face......ironic.

I'm now have the cast of Stomp rehearsing in my head and a whole set of joint screaming in pain. Time for a blankie fort, cuppa and snuggles.

A Summer with Arthur

As the summer holidays are drawing to a close I've taken time to reflect on how the holidays have been and how Arthur has impacted what we do as a family. 

I would like to say that the pest that lives in my body which goes by the name Arthur  (or rheumatoid arthritis psoriatic arthritis oosteoarthritis to be precise ) has not had any impact on family life but I would be lying. 

To be honest, there have been some horrendously painful days, days spent in a fog of fatigue and pain relief, days of subluxing joints, days with nausea, days spent at hospital appointments and days wondering where bruises have come from and why does having fun result in days of pain and rest. 

There have also been some fantastic days spent with family and wonderful friends. The purple chariot has taken me on some fantastic but challenging adventures. The first one was a trip to the London Acquarium. London underground is not fully accessible so careful  planning and consideration needs to be made. Unfortunately our day was not a fun as it should be because of the attitude caused by lack of training and awareness by one member of the aquariums staff. One member of our group is autistic and the aquarium poses various challenges for anyone but more so for our 4 year old friend. To be accosted for sitting down out of the way so he can have a drink and a minute to find his barings before walking through a crowded tunnel was not fun. To be accused of picnicking and the member of staff not to listen is not fun. Not all disabilities are visible. 

While wheeling round the aquarium looking at the fishes and enjoying the day one woman actually stepped over me to get to a tank and someone else physically moved me out of the way.  They pushed my chair! ! I mean what the actual hens teeth is all that about?  Talk about making me feel 1) invisible and 2) a second class citizen. Needless to say I commented rather loudly much to the amusement of my 10 year old. 

There have been some great trips.  One was to the Natural History Museum and the V&A.  The staff were fantastic and made the day easier by explaining where lift access is and inviting us to skip the long queue to enter the museum.  

I also have a wonderful powerchair which has enabled me to go on family walks to the park, into town for a coffee and wheel along the pavement holding my hubby's or my children's hands.  My new independence was made possible by some amazing friends and their fundraising. The ability to be able to go somewhere without the risk of falling or having to go home due to pain is very liberating.  

Most people expect someone with arthritis to be older.  Well I am getting older.  This summer I celebrated my 37th birthday making my time with Arthur at least 25 years.  At the beginning of the holidays myself and my family recorded a short film for Arthritis Research UK as part of their new campaign about how arthritis can be an invisible illness.  We were honoured to be part of the film and hope it raises much needed awareness. You can watch the film  by clicking the link 

https://youtu.be/bWS6cvxF280

This summer has been a mixed bag but one that I hope we have been  able to make good and happy memories with our children 

Bingo! A game of multiplying conditions

Have you ever wanted to shout BINGO when your consultant/doctor/physio adds another condition or problem to your ever increasing list? My new physioterrorist informed me with a smile on her face that I have an "anterior facing pelvis" to which I smiled and replied "I'll add it to my list". You see when you have one autoimmune condition you seem to keep collecting them as they bring their friends and family. Yes I'm aware that my "anterior facing pelvis" is not an autoimmune condition but it's certainly not helped by my non co-operative rheumatoid arthritis.

I often think that I'd like an easy day, one where I wake up pain free, jump out of bed with no stiffness,  that all my joints stayed in place and arthritis was just an old persons challenge. It's nice to dream isn't it?!

Despite my challenges I have been blessed to have met some wonderful people and to be involved with a fabulous charity Arthritis Research UK. I recently took part in one of their campaigns. I was filmed talking about how arthritis affects all aspects of my life and affects my family. It never gets easier talking about needing help with personal things and feeling as though life is passing by at a pace I am unable to keep up with but I have a huge sense of achievement to think that my story may help others feel as though they're not alone.

I write this blog after 18 months since my last one. I'm sat in the reception  of an orthopaedic hospital whose air con is set to Arctic blizzard while I wait for patient transport to take me home following my physio....with a sore hip as the over enthusiastic physio subluxated it despite my warnings of "if you move it that way it will......OUCH" I've much to update you on with my journey with Arthur and my new wheels 😀