The woman that almost runs a citizens advise bureau in Leeds, a business woman, developer, massive charity volunteer, runs the Bhangra group Sahara, is stunningly beautiful, has a to die for Yorkshire accent and she could one day potentially take over the world. Just a small point to note: she has Multiple Sclerosis
As someone who doesn’t particularly have a deep knowledge of medical issues or even MS; Rani Kaur stood out to me as someone who possesses the quality of a woman of substance in abundance. She has so much happening in her life. Work life, home life, Bhangra life and the small matter of MS which she slots in and doesn’t let it take over her life negatively. A true inspiration not just to other women but to the world.
I wanted to have a chat with Rani not just because I am doing Women of Substance month but because hers is a story which needs to be shared. She has a vast knowledge of MS and runs a group called ‘Asians with MS’. Rani has shared with me a detailed story starting from right at the beginning until right now. So let me introduce to you: Rani Kaur
I started off by asking Rani to give us a brief outline so that people like me have an idea what MS is all about and the type she suffers with?
MS is Multiple Sclerosis, which essentially means multiple scars. It’s an autoimmune disease of the central nervous system (CNS), nerve damage occurs on the nerve shaft (myelin) scarring it. This damage can initially repair itself (remyelination) but over a period of time, perhaps years the repair may become more difficult (demyelination). When myelin is damaged, this interferes with messages between the brain and other parts of the body.
I’m just getting geared up for MS week which is 23 – 29 May.
Is there one which is more common among men vs. women?
It’s more common in women than in men. Not sure why but that’s what the research suggests. Its ratio of two women to one man. Sounds scary but in relation to other illness the figures are something like this: for MS its 1 in 700 people:
- 1 in 9 women will develop breast cancer
- 1 in 14 men will develop prostate cancer
- 1 in 26 people has some form of diabetes
- 1 in 85 people has some form of dementia
- 1 in 240 people live with disabilities caused by stroke
- 1 in 500 people have Parkinson’s disease
How did you discover you had MS?
Well I had a sharp pain in my eye and what seemed to be a migraine for about 6 weeks.
I had lost my sight in my right eye and called NHS helpline to get some advice, they asked me many questions and then they arranged for me to be taken into A&E and told me to pack a bag.
When I got there they took me straight into a cubicle and started taking bloods, I was there for about 9 hours, seen by 4 different doctors. They made me do all sorts of tests; I think they were eliminating to see if I’d had a stroke of some sort. I was told at that point that I was being tested for MS.
I didn’t even know what it was, my head was full of stuff whizzing about and I still had no idea what MS was. I was petrified I had seen all sorts of people in wheelchairs and was convinced that that was it for me. There was a nurse that came and had a little chat, a kind lady. She asked me what I knew of it, where I could get help if the tests were positive. I get teary, warm and get a fuzzy feeling when I think of her even now.
Before your diagnosis did you suspect that this is what you would have?
Nope didn’t have a clue, I had some very similar symptoms about 5 years earlier and was unable to get out of bed for two months but at that stage I just put it down to burn out and fatigue. No tests were done at the time.
What type of tests are done when a person is suspected to have MS
My first test was a lumbar puncture, a standard procedure where spinal fluid is tested. I had to lie on my back for four hours in the hospital bed afterwards to ‘regulate the spinal fluid’. I then I had a MRI brain scan and electro visual testing.
After all the tests are collated a diagnosis is made by a neurologist. At this point the neurologist can’t tell you tell you which type of MS you have, that will come later. There are four types, but mine is the most common; Relapsing Remitting MS.
What was your initial reaction and how did your friends and family react?
The time between testing for MS and finally getting an actual confirmation was about two months apart. I made several choices at test stage, firstly not to go on the internet and frighten the life out of myself, secondly not to tell extended family and friends and thirdly not to share a positive diagnosis with immediate family until I had done the research and had seen the neurologist.
I told my partner straight away. My partner was amazing. He was upfront and said that he didn’t know what it was but he’d be there for me. He took me to my appointment to see the neurologist and helped me get my huge list of questions together!
After having had the appointment, I gathered the family and shared as much as I knew with them. Family were great and were rallying around to look after me (I’d had another relapse by this time).
It’s kind of strange but although I knew the science bit, I still didn’t accept the potential severity of the condition so I just carried on completely overdoing it until my next (third relapse). I then got a bit savvier about my condition.
It’s quite scary to know that what you’re reading isn’t an abstract medical article but a snapshot of what’s likely to be going on in your body at some stage. I’ve never forgotten that fear and complete isolation.
Extended family; such as my cousins were so cool as were my aunts and uncles. I think they struggled with the whole concept of MS. Getting the right words for it is so hard. Both my masi’s (maternal aunts) really found it difficult to get to grips with and understand. Neighbours thought I’d had a sports injury, other people thought id got arthritis and so on. Sometimes it was easier to just nod and say ‘hanji, sat lagee si’ yes I hurt myself.
My friends have been great support networks over the years; I get loads of cuddles when I need them.
How did you cope in a time when like you said, there were not many support groups for Asians back then?
At diagnosis stage I think I was the only Asian in the local authority area that had been diagnosed, there were no groups around at that time to offer guidance or support for Asians who were trying to come to terms with MS. This made explaining the condition more challenging to parents/family members whose command and understanding of the English language is limited.
Did people treat you differently once you had told them?
No, most people were fine. I think the most difficult thing was not being around as much as I used to, some were a little annoyed at first but when they understood the issues with fatigue and pain that I had, it was not an issue.
I think the most challenging issue that I had personally was with people who don’t know me which ranged from staring at me from afar but avoiding eye contact when walking past me. An ‘uncle ji’ who would always stand and talk to me and ask after me and say that he would offer prayers for my good health. It was a mixture of good and bad I’d say. I did try and run over a security guards foot once when he talked over me (I was in a wheelchair) and then he bent down and spoke to me r e a l l y s l o w l y. My partner gripped my chair for dear life and muttered an Indian swear word under his breath.
If someone suspects they have MS what would you advise them to do? Where should be their first port of call?
Avoid Internet Search Engines. List the symptoms that you have and monitor over a period of a month or so, and then take that to the doctor. The doctor will do some elimination tests first as you may have an infection or low blood count or other things. If your GP thinks there’s cause for concern they will ask for a referral to a neurologist.
One of the most common first symptoms of MS, which is a trigger for tests is loss of eyesight (optic neuritis), obviously if you have that you won’t need to get a referral, you will probably be tested and treated straightaway.
What medication or treatments have helped you the most?
I’m the worst patient in the world when it comes to taking tablets etc I don’t even think I’ve ever finished a course of antibiotics. I was quite ill in the first few years as I was struggling to work out what to do and how to be with my MS, had loads of different medication for symptoms such as for pain and fatigue. I didn’t find them particularly helpful to my body as the MS symptoms were then followed by the side effects of the drugs. I came off all of them over a period of time in partnership with my GP (who was ace) and my homeopath.
Have you tried any alternative therapies? If so do you think that they work?
I took homeopathic medicines for a few years, took remedies to strengthen my immune system, deal with pain and manage my fatigue. It made a huge difference to me and partner/friends and family all commented on it. I’d had a serious relapse and gave myself a target of getting out of a wheelchair. I worked really closely with my physiotherapist and occupational therapist. I transferred to sticks, then one, then I ran two race for life’ two years in a row.
You have told me you run a support group for people with ms tell us more about…Where can people get information on it?
A few years ago I set up a Facebook group for Asians with MS; I wasn’t attached or linked to any formal organisation. I have supported many people via email/messaging over the years including family members who were concerned about siblings/children being tested for MS.
If you just want to have a talk with someone away from your family to help you get your head around it, call the MS Society helpline or speak to us at Asian MS. I’m a social media advocate and have now got the Asian MS Facebook page, Asian MS twitter account too:
Twitter – @AsianswithMS
Or call the MS Society on 0808 800 8000 and one of the Asian MS team will get in touch with you or your family members if you want them to.
The MS Society linked my group onto their website and I connected with and got elected onto the national Asian MS board last year. Now the two are part of the same work.
Do you have any advice for people newly diagnosed?
Get your medical team sorted, talk to your GP. Take a list of questions for the neurologist and make sure you connect with the MS nurse, she/he will be the ones that co-ordinate your physio etc if you have a relapse in the future. MS nurses are a lifeline, it is key to talk to them, they will have their finger on the pulse of what support is available in the area. My MS nurse has my number for newly diagnosed Asian MS’ers who needs a chat. Get the leaflets about MS, the MS society do some, so do the MS Trust.
We’re all trained at Asian MS but we add the dimension of being from an Asian background and how having MS fits into that.
Do talk to your loved ones; explain how you feel, what the condition is and what it means to you. Families will have questions too and have many questions that you may not know the answer to. They can call Asian MS too. Keeping it bottled up inside is not good for you. I have supported lots of people, some haven’t told their family for years because of the stigma they feel they will get personally, so I offer support to those people on their own.
Most people who are diagnosed with MS are in the 20/30s and of working age, so no doubt you may be working, it’s worth talking to your employer especially if you are going to need to take time off here and there for appointments. Under the disability discrimination act you are protected so you’re employer should behave reasonably with you. You don’t have to tell them if you don’t want to, but it could be helpful to you both.
It would be worth considering your lifestyle and diet too, especially so if you have a busy life, always on the go and eating as and when you get a chance. By diet I don’t mean diets that eliminate so much that all you’re left with is the packaging to inhale, but eat proper food, avoid processed meals if you can. It won’t be easy as I speak from personal experience, but try to eliminate causes of stress and things that needlessly zaps your energy. Make time for yourself and don’t feel bad about saying no to people if you’re struggling to even stay awake on the sofa.
There are lots of local groups across the country for people with MS, now if you wish to join one of them then that’s great. A word of caution though. You will see people in wheelchairs, using walking frames and so forth, it’s important to know that your MS may not necessarily take you down that path. You could have one or two relapses/episodes then be fine for years. I cried for days when I went on a course for MS’ers and their carers, I’d convinced myself that I’d had it and I was going to die within 5years. After I’d calmed myself down I realised that I was being a prize idiot. So it’s worth remembering that J
Use technology and gadgets to save time and energy. I have a steam cleaner to avoid endless scrubbing and chemicals and use the internet to have shopping delivered home.
MS is a serious condition but do you have any funny stories about it?
Ha-ha, yes actually in the early years of illness I’d had a relapse that really took it out of me and I was in lots of pain. Family/partner etc were all very worried and it was suggested that I try cannabis. So managed to get hold of some and I was being taught how to smoke it. Only I was rubbish at it and the person ended up stoned trying to show me.
Not to be defeated in their mission, they made it into hash cake, with, erm, Bob the Builder pictures on it. I obediently ate it and was knocked out, best sleep ever. I fell asleep on the toilet. The only problem was that I had a cuppa in the morning and had a bun forgetting that it had cannabis in it and remained conveniently stoned all day, had the munchies and everything.
Tell us about your ‘day job? Do you enjoy it?
I have worked in the charities sector for over 20 years. I really do love my day job; I’m an operations manager of a Citizens Advice bureau in Leeds. I manage the building that we’re in and the advice service team that deliver the service in house. I’m also acting deputy chief executive of the bureau when my boss isn’t around.
Most of my work is managing the day to day service and the staff, change management of the advice service, developing new models of delivering advice and also doing lots of strategic aspects across the city, which inevitably means lots of meetings and travelling about. I do get a buzz out of it when staff gets clients their benefits or their debts sorted.
You also manage the group Sahara. How did you get into that? Can you share any wonderful experiences with us?
I was the first female Bhangra Music DJ in the North. DJ Ritu was the first in the South. This was many years ago and that’s when I first met the guys. I met them again a few years later and Herbie, the lead singer, asked me if I’d manage them, I’ve always liked the guys as they’re really respectful and a good laugh so agreed. As for experiences, well, we have a motto what happens on the road stays on the road so I couldn’t possible say but there have certainly been a few moments where eyebrows have been raised J
They look after me and we’re on the phone regularly to each other. Herbie is the sensible one, Kully is the quiet one and G is the footy crazy one but he’s also very shy. Bless.
How do you balance work, the managing of the Asians with Ms Group and the managing of Sahara? It sounds like hard work!
I manage my diary with military precision, when you enjoy what you do, you just make things fit. I don’t bring work home but may occasionally work later to finish it off. The MS group has my attention in peaks and troughs, especially when there may be something that needs to be consulted on or shared with the people across the UK. I try not to go to too many gigs with the boys but do keep involved for example in the studio etc. My passport and suitcase is ready for some international touring, obviously J.
Do you have a motto in life?
Actually I have loads of sayings this isn’t a motto but the way I live my life I guess. Which is based upon my faith, “nam japo, vand shako, kirth karo” which translates to remember gods name, share what you have and serve others.
The way I deal with things can be characterised by ‘put on your big panties and deal with it’. I saw a Facebook sticker and liked it instantly. It has a resonance I guess as that’s what I’ve always done, just dealt with stuff head on.
Do you believe that we will see a cure for MS in our future?
Well there certainly seems to be things happening at present that look promising. I would desperately like to say yes its coming, but not sure when. I do believe some kind of breakthrough will happen and people who are newly diagnosed or yet to be diagnosed who will be able to benefit from it. Certainly medical profession is thinking outside the box and doing lots of great research work.
Have there been any technological developments that have made your life easier? Or anything in the future that you would like more funding to be spent on?
I don’t know about technological, but I certainly love my tens pain machine and wouldn’t have managed without it at times.
In terms of medical advancements I am lucky to be taking Beta-interferon, which is lovingly known as a DMT, Disease Management Therapy. This isn’t a cure but a synthetic protein that latches onto the free radicals in the body that damage the nerves, making them whole again and harmless.
It’s believed that DMTs reduce amount of relapses that you have and also slows down the condition. I know my health has certainly improved using it. The cost attached to it is always a factor in getting it prescribed, I had to really fight for it with my neurologist, but my MS nurse was so supportive and gave me the confidence to argue for it. There’s lots of talk about Vitamin D and MS at the moment so it’s worth checking out the MS sites to see what’s being discussed.
If you were given an unlimited amount of money from someone what would you spend it on, within your group of course, that would benefit people with a similar condition to yourself?
Off the top of my head:
- I’d start with developing resources in as many community languages as possible to explain MS
- Develop a training course for volunteers who wanted to support Asian MS’ers, this would include myth busting and facts. I’d also sell this to primary care trusts and so forth.
- Set up subsidised respite centres for Asian MS’ers to enable carers to get a break
- Set up a telephone help line offering advice about care plans, benefits, employment issues etc using multilingual staff/volunteers.
- Fund medical research
- Run a national road show of talks across the UK, raising awareness in faith organisations/community groups about MS.
- Run a national media campaign (press/radio/social) alongside to raise awareness.
- Run gender specific sessions around the more personal issues such as marriage, sex, children and so forth. Run by same sex supporters.
What are Rani Kaur’s hopes and aspirations for the future?
Hope a cure is found in my lifetime. Aspirations simply to be happy, healthy and able to help others.
I would like to Thank Rani for her time in contributing to this article. I wish her all the health and happiness in the world, please join me in cheering for Rani, this wonderful woman!
You can follow Rani on Twitter: http://twitter.com/#!/Rani_kuk
Again the details for Asians With MS are:
Twitter – @AsianswithMS
Or call the MS Society on 0808 800 8000 and one of the Asian MS team will get in touch with you.