Wheels, Trains, Needles

Apologies for not keeping this blog up to date. I’ve been rather lax, I’m sorry.

I wanted to bring you up to date on life and the challenges that not only I face but many other disabled people face. I did intend to do a Vlog but I found this is easier for me at the moment.

In November I had a hearing check up. I couldn’t hear with my hearing aids and ear moulds were uncomfortable. I wasn’t expecting to get the result I did. My GP advised the only appointments showing were at a health centre rather than the hospital where I was previously being seen (and who informed me I had to get another referral from the GP as it had been 2 years since the last hearing test) So off I beeble to the health centre and have the hearing test and the results are Profound Bilateral Hearing Loss. Ffs! Like I need anything else but at least I know the level of sound I can or rather cannot hear.

So new ears are fitted and so begins the process of retraining my brain to background noise and how some sounds sounds through a mechanical device. I’m still (3 months on) trying to retrain my brain. 

Last week I had the privilege to deliver a short talk (about 30 mins) on my journey, life, experience, however you want to put it, of living with rheumatoid arthritis and disability to a group of new employees at a wonderful charity. I’ve not been particularly well and my pain and fatigue levels are high and poor mobility so Hubby and me looked at the journey and how I would do it in the power wheels. The journey had its good points and some not so good points. 

On the London Underground stations which are accessible for disabled people have this sign displayed on the map (keep this in mind for the rest of this part of the story!)

 So my journey is planned and I’m aware it will start with a bus as my local station has steep steps which feel as though your navigating Everest. Lovely station staff at the first station help me, second station is level access, sweet! However the station that was at the end of my journey had one of these symbols next to it. As a wheelchair user I took this to mean I could get off the train, level access and exit the station. Not quite. On arriving at Farringdon station this  is what I was presented with.

 Not only was it not level access it had a gap

That my wheels would not be able to bridge. Thank goodness for a quick thinking passenger who blocked the door to prevent it from closing and the train from hurtling off toward Kings Cross. A station assistant came running down the platform as if his life depended on it and exclaimed “we didn’t know you were on the train! Why didn’t you call ahead?!” I pointed to the accessible sticker next to the station on the map and the reply was “but it’s not fully accessible, I’ll get a ramp” 

Ramp is put in place and I go on to do my talk, which went very well. On returning to Farringdon I met the lovely Billy who is a customer service assistant. Nothing was too much. He called ahead to let the driver know, and the stations I would be travelling to. Ramp was got and I wheeled on to the busy train. 

This week I have had facet joint injections and sacroiliac joint injections. These help with pain and inflammation in my spine. I’ve had them lots, they’re not pleasant to have and the needles are mahoosive! But, they do help. Only down side is that they wear off and need repeating. My admission time is 12:30 as these are done in theatre on the day unit by my pain management consultant, the Dashing Dr Huntley (I’ve mentioned him before in past blogs and yes he knows that’s what I call him)  besides you have to have a sense of humour when you’re naked, face down on the operating table and there’s a man in a lead jacket with a bunch of needles that could be used on an elephant!  Anyway I book in and I’m shown to a cubicle. A student nurse does some of the paperwork and is joined by a senior nursing member. I explained that I’m deaf, please face me when speaking, it should be on my notes. The reply shocked me! “ No! You don’t look deaf!” I was and am gobsmacked that it came from a nurse. 

The issue of me being able to hear or not while having this particular procedure done is overcome by the fact the theatre team at Queens Hospital are amazing. Colin, the guy who gives me the sedation when I need it to get through the procedure sits by my head and relates everything back to me. We also shared recipes and have a bit of banter. Having this relationship with the medical team makes things a lot easier and more relaxed. It’s a relationship that has grown over the last 4 or 5 years (possibly more) I don’t think the team get anywhere near the recognition they deserve, they are simply fabulous. 

I can honestly say that the sacroiliac joints were the worst followed by one of the facets. This is due to the being inflamed, the reason for having the injections in the first place. Picture is me enjoying the sedation as it wears off 😀 In an ideal world these injections would be done every 4-6 months but the  NHS waiting lists are long and growing day by day. The doctors, nurses and medical teams are under extreme pressure to meet targets and unfortunately the patients become statistics rather than people. 

Living with any long term medical condition or disability means coming up against various barriers and challenges. These are often put in place by the Abled community and their misconceptions. Just wanting to travel means navigating public transport which isn’t as accessible as we would like it, but it is improving slowly. The attitudes of well meaning people with back handed compliments is a daily occurrence. The stereotypical image of a disabled person needs to change and to do that we need to speak out, celebrate our differences as we all have opinions, hopes and dreams. 

Life on Disability Benefit

Its one of my bugbears that people think life on any benefit is easy and that its all handed to recipients on a plate. That couldn't be further from the truth. I lost my job, the job I loved and enjoyed, 4 years ago this month. My contract was terminated on medical grounds. My RA had got to the point where it wasn't controlled. Its still not controlled and I pay a price for doing pretty much anything. The price of pain and fatigue.  It was a dark time for me. I would like to say that its got easier over the last 4 years but more and more barriers are thrown my way.

Those living with long term health conditions and disability are humiliated in the most undignified way on a regular basis to be able to claim the help and financial support they need. Going through humiliating assessments and endless applications to prove their condition or disability. Most have worked hard throughout their working lives. I started working at 16, worked 2  or 3 jobs through college and university thinking I was setting myself up for a good, financially stable life. I never saw this coming. I thought my life was mapped out...… Good GCSE's, A Levels, Degree, Job, House, Husband, Family. I had all that. In fact I still have good GCSE's, A Levels, Degree, House, Husband, Family. I don't have a job. A job would mean we would be financially stable. It would mean that I can pay my bills on time without having to phone the companies grovelling for a payment arrangement. It would mean that I don't have to chose one bill over the other. It would mean that I can say to my children "yes you can have that" or "yes you can go on the Scout Camp" or "We'll get new school this weekend" rather than making excuses as to why I can't. It would mean I have self worth.

Imagine worrying about how you will pay the winter gas/electric bill so you don't put the heating on apart from an hour before the kids go to bed so their bedrooms are at least warm for them to sleep in. Wrapping up in duvets and blankets to keep warm while hubby and kids are at school. Knowing that once you're cold its difficult to get warm and your pain levels will be exacerbated. And then the bill comes in and its still the cost of your monthly benefit amount. Phoning the utility company and the agent at the end of the phone speaking to you like a piece of dirt, or benefits scrounger. When in actual fact you're an educated person who has worked hard, had a good well paid job but due to circumstances is in a situation they never thought they would be in.

I've applied for jobs but I've been told I'm not experienced enough despite having more than enough experience. I then applied for 2 other roles to be told I am over qualified. WTAF?!! I can't win.

So, I'm living a life of robbing Peter to pay Paul. Regular assessments by the DWP for the money I get to stretch out to help keep a roof over our heads, clothes on the kids, the clubs the kids do (Scouts, Dance and Music) Like every parent I sacrifice the things I need or want so they can have the things they need. I ask Havering Music School if there was any support for low income families or children on an EHCP towards the cost of H's music lessons. I was told no and that the fees were being increased. I've approached the school but haven't heard if we can get some support for him towards the cost of the fees. The Arts should be available for all not just the wealthy. Music has helped him focus. A's dance fees are expensive but she's a talented dancer and its her passion. However the long and the short of it is that these extra curricular activities will stop and then they will be children that say inside watching TV. All parents want to see their children happy and succeed.

Life on disability benefit is not a walk in the park. It's humiliating, demoralising, stressful, worrying, difficult. Just remember that anyone's circumstances can change. You can go from the top to the bottom in a heart beat. You don't know what path another person is having to walk. In a life where you can be anything, Be Kind.

Give a disabled person a chance! We want to work!

Its been nearly 4 years since my full time contract of employment was terminated on medical grounds. It was the all time lowest point of my life. I felt a failure, worthless, no longer part of society, unable to contribute to the ever increasing costs of keeping a home for my family. All those feelings came rushing back recently when I decided I would try to go back to work and start looking for paid employment. I have a lot of experience and transferrable skills. Also I haven't sat on my oversized behind doing nothing with my life. I am learning British Sign Language, I have spent nearly 7 years (4 of those intensively) raising awareness of invisible disabilities and illnesses especially arthritis. I've campaigned for inclusion and diversity. Volunteered for a charity doing media pieces and talking about my experience of living with a disability. I set up and run the Invisible Challenge page on Facebook which is nearly at 22k like/followers. Oh! and I'm a Beaver Scout Leader and the Deputy County Commissioner for Inclusion for the County I belong too so you would think apart from my professional career in which I was a Risk and Compliance Manager, trained as a teacher, and completed my Management Licence with the Bank I worked with I would have a wealth of experience and knowledge but apparently I  don't . You see have a number of disabilities one is rheumatoid arthritis and it causes extreme pain, fatigue and mobility challenges. I'm also hard of hearing and wear bilateral hearing aids.

I spent time updating my CV and received help from a number of people, one is a friend and others actually work in HR departments for various large companies or are hiring managers themselves. I got great feedback and help in optimising my CV. 2 people gave feedback which stated that my experience is really impressive and it will be very attractive to future employers.

 I looked around and saw a number of roles that I know I could excel at. Some roles even mean I could be actually making a difference in the world rather than being what people call a "scrounger" on disability benefits. I hate that word. Hells teeth! I would rather be working than having to go through the indignity, stress and  downright horror that is a DWP assessment to prove my conditions and disability. Another friend messaged me privately as they knew I was hoping to find paid employment. They have experience in such things and advised me NOT to declare my disability until I was invited to interview. The reason being they will see me as a person and not the disability. If they withdraw the interview after finding out my disability they are liable under the Disabilities Discrimination Act / Equalities Act.

Now I was under the impression that disability shouldn't be a barrier in this day and age but how wrong and naïve am I? Being the honest upfront person I am I didn't heed this persons advice and I declared my disability on the 3 applications I submitted because these employers are supposedly signed up to the Governments Disability Confident Scheme which guarantee's a disabled person an interview if they meet "at least the minimum criteria" for the role. Now I must have been way off the mark because the feedback I was given in all cases, and one role I could do with my eyes shut, was I don't have enough experience. I spoke to two friends as needed a sounding board and they had copies of the job specs. One is disabled and would dearly love to work, is studying again and does countless voluntary work, just like me. The other is one of my oldest friends, has a doctorate and is an all round good egg. Both said that I met more than the minimum criteria. So really, is signing up to the Disability Confident Scheme worth the paper its written on? and that because I do high level voluntary work why on earth would anyone pay me as voluntary work doesn't seem to have the same level of respect as paid employment. They both said that I should take a step back from the volunteering.

Funnily enough I have had a number of offers offering voluntary roles since. So I have plenty of experience to do voluntary work, enabling change, managing teams, inclusion/diversity roles ie: not being paid but it seems if I declare my disability I am not worthy of having paid employment. Realistically if an employer has applications from a number of able bodied people and a disabled person who meets at least the minimum criteria, are they actually going to offer the disabled person an interview? In my experience and in talking to the wider disabled community the answer is No.

So all those feelings of inadequacy, not being worthy, not being part of society, not being able to contribute, and being a failure all came rushing back. Disabled people want to be part of society and we want to work. We are able to work IF someone gives us a chance instead of writing us off. There is the Access to Work Scheme to help with the costs, but you need to have a job first. Yes an employer may have to put adjustments in place to enable us to be within the workplace but there is help via access to work for the cost of these. However my experience is nothing out of the ordinary and many other disabled people have the same experiences in trying to return to work or get into the workplace. My decision now will be if I find another role I am interested in and I know I can do, will I declare my disability? It will be interesting to see if I get an interview IF I don't declare it.

https://www.gov.uk/looking-for-work-if-disabled

Aids & Adaptions

Many people are still under the misconception that Arthritis is just a touch of joint pain. Did you know there are many forms of arthritis and they are all painful and debilitating. Arthritis can creep up on you over a long time or it can hit you hard flooring you and turning your life upside down.

We suffer crippling pain,  horrendous fatigue, hot swollen joints, immobility, falls, frustration, isolation and when you begin to struggle with daily tasks such as going to the toilet, getting washed, getting dressed and making a cup of tea it can literally feel as though your life is falling apart. I am lucky, I have a hubby who is amazing and will do absolutely and literally anything for me, but when I had an occupational therapist assessment the other year and were told that our house, the home we had made to raise our children, was no longer safe for me to live in, I felt completely lost. Imagine being told that, the home you have bought, have ploughed all you money into is not safe. Thankfully my Occupational Therapist is pretty clued up. My assessment was very  thorough and she provided me with a prescription for a number aids that would help me. However not everything is available on prescription and we are not in the position to be funding adaptions such as stair lifts, wet rooms and step lifts.

There is funding available through your local council called the Disability Funding Grant. It is a means tested grant but any help is better than no help at all. For me it was a long a drawn out process and one that I have spoken about before previously in this blog. Without it I would be stuck indoors with little independence unless I have someone with me. The DFG has funded an amazing step lift at the front the house which means I can get out safely with my wheelchair. It has also funded a stair lift for me to use. My wonky body means that I fell down the stairs on a regular basis.

Its not just the big things like stair lifts and step lifts that someone with Arthritis may need. There's little things that make a big difference like cutlery. Regular knives and forks are difficult to use when your hands are stiff and painful. When I was looking for suitable cutlery I was disappointed to find that arthritis friendly cutlery look like kids  cutlery and there is no hope of cutting your meat up with a blunt knife! My talented hubby saw my frustration and embarrassment at having to use these knives and forks and made my own set. Opening cans was impossible until we got a battery operated can opener. Standing in the kitchen is hard when your legs don't work properly but the addition of a perching chair has meant that I can supervise what is happening in the kitchen. Raised toilet seats and frames mean that I don't have to ask my hubby to take me to the toilet. Having a bath board across the bath enables me to have a shower sitting down, although I still need help from my hubby to help wash, dry and dress. The things that most people take for granted are like climbing a mountain for someone with arthritis. Here are just a few of the aids and adaptions that I need every day

Arthritis Research UK released a paper today highlighting that people with arthritis are being let down by local councils and authorities and people are missing out on the necessary aids and adaptions that can make a massive differnece. From personal experience the process is difficult and when you are starting down this path you don't know where to turn for advice and help. Many people don't even know they may be entitled to help with costs and may be able to get many useful living aids on prescription.  Have a look at the Arthritis Research UK website, they have a wealth of information which can help.https://www.arthritisresearchuk.org/news/press-releases/2018/june/report-reveals-people-with-arthritis-are-missing-out.aspx

I will be speaking at the Houses of Parliament in a couple of weeks to highlight the need for aids and adaptions for those who have any of the many forms of arthritis. These adaptions can make the difference from being independent and living a full life to being isolated and restricted. If you could please invite your MP to the reception, to hear my experience of living with rheumatoid arthritis for 26 years. Just follow this link http://action.arthritisresearchuk.org/page/25362/action/1

Now I know my home looks a bit odd and more like a care home for the elderly and its taken a long time for me to get my head round the fact that I need all this help, but now my home is safer (I still have falls but they are reduced) and I feel useful, fulfilled and no longer as isolated.

There’s more to Me than my Disability’

I know other people feel the same as it’s a common topic of conversation on support groups and between friends who are hobbling the same or a similar path. Why can’t people just see past our disabilities? Funnily enough the DWP are able to see past any persons disability and into a completely parallel universe where the challenges of living with a disability are not even present (wouldn’t that be nice)

Illness and disability can strike at any age. Ripping apart any hopes or dreams that you may have, but you fight back. Learn coping mechanisms, take the toxic medication that makes your hair thin, put weight on, nausea, fatigue yada yada you get the idea and yet people only see the wheelchair, the hearing aids, walking sticks, crutches, wrist or ankle braces. Your career is pulled from you like a rug on the floor but you focus your efforts on other things. Family life maybe, writing, drawing, crafts, possibly volunteering. However there are very few that can see your potential because all they see is the wheelchair, the crutches, the walking sticks, the braces. The what you might not be able to do rather than the things you can do and the skills and talents you can can bring to the table. You put time, effort, research and experience into tasks and causes that are important you but you don’t quite hit the mark or the grade in the eyes of those who make decisions but are happy to use your ideas and hard work.....kinda sucks, actually it sucks big time. Do you think they are looking past the disability or putting barriers in place? Many people living with long term conditions or disabilities have come up against the same or similar scenarios and situations. I wish I could make it right. Shake the world and say get a grip! Use the skills of those around you and their passions and experiences. Be kind ! However for now it’s a case of putting on my big girl pants and continuing to fight for the rights of disabled people. Fighting to make the world more inclusive and raising awareness of all disabilities whether you can see them or not. Just because a person has a particular disability does not mean they can not be a part of society and make a difference.

I made this video with Arthritis Research UK nearly 4 years ago, I was at an all time low just being evicted from 2 weeks in hospital suffering with the most horrendous flare up. This is my life living with severe RA and hypermobility. I like to think of it as being Differently Abled not Disabled.
https://vimeo.com/149154005

Please see past the persons challenges and see their potential, their spirit, their soul. There is more to a person than their disability.

Acceptance ?

Do we ever full accept our long term conditions, illnesses,  disability? Or do we merely just learn to compartmentalise putting feelings, thoughts etc into boxes where they bubble over from time to time to rear their ugly heads? If you catch me on a good day (whatever that might be) I’d say yes I’ve accepted that my life has changed and I have to go about things in a different way. Sort of like taking the scenic route somewhere rather than the direct motorway. But, and there’s always a but isn’t there? If you get me on a high pain, high fatigue, low mood day then, apart from giving the iconic “I’m Fine” answer, the conversation going round in my head is likely to be “I hate this”, “I hate living like this”, “I want the pain to stop just for 5 mins” , “why me?” , “I want the old me back”

I often get told how inspirational I am, but, I don’t see that. To be honest you never know what being strong is until being strong is your only option, especially in public. I’m as guilty as the rest of the wonky RA and chronic pain community for putting on a mask, smiling and trying to look normal when inside I’m shattered. This week is Mental Health Awareness Week. Over the years I’ve noticed that there is little to no mental and emotional support offered or available when you are diagnosed with a long term health condition. Many people, like myself, have co-morbidities and that can plunge us into a never ending cycle of pain and depression. Although I have never been disagnosed with depression I do know that my mood can be low. I have dark times when I can’t see the light at the end of the long dark tunnel. Mental health AND long term ill health go hand in hand and there should be some support and guidance out there.

Over the last few weeks I have learnt what awesomely amazing friends I have. Some of those friends have long term conditions themselves. There’s a few that I literally couldn’t live without (they know who they are). They drop a message or text to say hi, post funny posts on social media, pop by just because they are in the area, pick me up to go for all you can eat breakfast while we talk about anything from men, children, being wonky and sex. Some of those even kept me going on the annual trip to Hastings for a weekend with Giants and Greenmen. I’ve learnt that my hubby still loves me after nearly 12 years, still finds me attractive despite my wonky body and is still proud to walk down the street with me whether he’s holding my hand with me in my power chair, pushing me in my wheelchair or resting his hand on my hand while I hobble on my crutches. What I suppose I’m trying to say is that even when times feel dark and all I can do is curl up and cry, I’m lucky enough to have some really important people in my life who for whatever reason actually think something (not nasty in a I want to get a hitman out on you way) but in a good way. I need to tell those people more often that I value their friendships and love them. I’m thankful to have them in my life.

New Coping Mechanisms & Skills

If a consultant told you to go on a Pain Management Programme I’m guessing your first thoughts would be “not sure this is for me” or “I’ve heard mixed reports about them” or “what am I going to get out of it” and to be honest those things went through my head too. I have a fabulous Pain Consultant;  the dashing Mr Huntley, and he talked me through what to expect and that he thought because of my positive outlook I would benefit from the course. So I went on the waiting list for a programme close through home that isn’t residential.

I’ve just finished Week 1 of 4. Thankfully it’s 2 days a week and run by a team specialising in chronic pain. Sitting in the room at our local YMCA I was apprehensive for a number of reasons including would I be able to sit from 9.30 - 4.30 and was I going to be expected to do exercises that would hurt, put me into flare or pop a joint. My fears and apprehensions were unfounded. The group is made up of 9 people all suffering with long term pain conditions. We all introduced ourselves and gave a brief background to our pain history. It was so refreshing to be in a room of people where everyone understands and “gets you”. The pain team are very understanding and know how hard living with long term chronic pain is. They are genuinely there to help us get our heads round our own situations and adapt effective coping mechanisms so we don’t have to rely so heavily on opioid based medications, which, lets face it are bloody awful drugs with horrendous side effects.

The first 2 days have been exhausting and on day one my eye lids were heavy as the freight train that brings relentless fatigue hits me. Theory based information talks are interspersed with practical activities to keep our stiff bodies moving and a little bit of team building to build up trust and friendships within the group. I can honestly say that I’ve met some amazing people this week and I know we’ll keep in contact after the course. The funny thing about living with a long term condition that’s invisible and has chronic pain at the core is that you learn what and who are important to you. You meet people who truly understand what you’re going through and how you feel. Others fall by the wayside, you learn who are your true friends. I have always believed that people come into your life for a reason and leave for a reason or when their purpose has been fulfilled (a bit like Nanny McPhee) There are fair weather friends and friends for all seasons. It’s the friends for all seasons that are important and will pick you up when you fall. Laugh with you, cry with you and see the pain behind your eyes and the “I’m fine”

I’ll be going into week 2 with an open mind and looking forward to learning new coping mechanisms. For anyone that’s offered a pain management programme don’t poo poo it and think you’re being fobbed off. Go in with an open mind, you might be pleasantly surprised and if nothing else you will meet people who truly understand what you’re going through and how you feel .