#endPJparalysis

Yesterday on twitter I saw NHS Lothian posting about #endPJparalysis. I heard a little bit about it through the grapevine at work and around the hospital on the Tuesday. I didn’t get to see what was being done on Wednesday but from the photos there appeared to be a bed space set up in the main mall complete with locker and table with members of staff in their PJ’s.

It got me thinking about when I am in hospital and what I do. Other than hating being put in a gown and I will do all I can to not wear a gown I think it depends on where I am in hospital. Generally there is always a trip to ICU or HDU (or the past few years every admission involves one of the two) where sometimes a gown is essential just for ease to the staff but otherwise it tends to be a PJ kind of place. My PJ’s are generally t shirts and boxer shorts mainly because it is so hot but also a lot easier when dealing with IV lines in your feet, catheters, cardiac monitors, BP cuffs, oxygen, oxygen probes. You name it, its probably attached.

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(despite appearances this is clothes. T shirt and shorts- yes I am using my oxygen to blow up my nephews front balloon, like I have the puff to blow it up!!!)

But once on the ward and feeling better other than last summer when the ward was so hot PJ’s had to be worn as they were the lightest clothes I had a the time. Generally and looking back at photos I have what I call my “hospital clothes” which is light weight joggers, shorts and t shirts, and flip flops. Then when its night I change into my PJ’s. It gives me some normality and makes me feel a bit human and also not the sick person (not sure how I feel not the sick person but wearing clothes makes me feel like I normally do as I don’t slob around in PJs at home). It makes the day seem more day like and as you do at home you wash, dress and get up. I try to do this in hospital. The one thing I am bad at is staying on my bed. I make my bed and get changed but I find that being quite tall the chairs are so uncomfortable and wearing joggers I just slide off them when I slouch!! So I prefer to stay on my bed and sit on it.

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(this photo was taken when my friend dressed up to surprise me when I was in hospital for over 3 months. But despite the oxygen, nebs, IV lines, Im dressed in a golf shirt and comfy bottoms).

This last time I was in hospital I think it was the other ladies in the bay kept asking me why I got changed etc when I wasn’t doing anything or going anywhere. They all preferred to stay in their night clothes because they were sick and in hospital so thats what they should wear.

I do think that sometimes there is a time and place for night clothes. Like if in ICU or HDU or when quite unwell in the ward but if your up and about then you should be in clothes, not very smart but comfy stuff.

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(post allergic reaction in HDU and not happy about being in a gown!!)

I fully support the #endPJparalysis. I find getting up and dressed makes you feel better. No matter how hard it is. Often the process of getting up washed and dressed is flanked by nebulisers at either side and sometimes even during a wash or something but it is worth it and all patients should be encouraged. Hopefully this campaign will see a change and less people will be sitting around in PJ’s but dressed in day clothes and save the PJ’s or nighties for bedtime!!!

Guest Blog- Evergreen Nebulisers

I am really excited for this guest blog. I have been using nebulisers since I was in school. When at boarding school I used the school nebuliser but once I left school I wasn’t on them long term until my asthma got a bit more tricky to handle and then you always needed a power point to plug the nebuliser into until I was given a portable nebuliser from a patient who was in hospital with me. She sadly died and her husband gave me the brand new nebuliser “Aeroneb Go” which made life so much easier. Since then I have been very fortunate to always have my work horse nebuliser and then my mini nebuliser which comes everywhere with me (even when in hospital it comes to the shower with me!).
Evergreen Nebulisers have been my life line. I have bought a lot of nebulisers from them or parts for nebulisers when the NHS can’t supply. They have a wealth of knowledge and care that its hard to go to anyone for my nebulisers!!! They have even sourced things that were not on their website. (Just a note- they haven’t told me to say this it is my own beliefs and the beliefs of my friends).
About Evergreen. Based in Wigan, Manchester, we are a long established family business which has grown successfully over thirty years. With a background in both hospital and community healthcare, we started out servicing and supplying nebulisers in the North West. Through customer recommendations, the support of our suppliers and developments in technology, we have continued to build the business to our own high standards. Our aim is to assist you in selecting the most appropriate unit to suit the way you live your life

Top Ten Common Mistakes

They’ve been made before, they’ll be made again so here’s a rough guide so you don’t have to make any of the Top Ten common mistakes regarding nebulisers.

Not checking what resources Health Professionals can provide locally.

Despite what we read in the press most NHS trusts provide knowledgeable and efficient COPD, Chest and Respiratory clinics. It’s always worth checking with them what support is available for you. Self Help groups such as Breathe Easy can also be a source of invaluable local knowledge.

Thinking a nebuliser will work without medication.

People are fearful and often panic buy or are influenced by their friends into thinking a nebuliser will be a good idea. Nebuliser medication is only available on prescription and without this medication a nebuliser is just fresh air!

Considering tap water for use in a nebuliser.

Nebulisers are powerful medical devices and should only be used under the direction of a medical professional. Nebulising anything not recommended by a medical professional can be detrimental to your health.

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Spending more on a nebuliser can give a slightly quicker therapy but this doesn’t suit everybody. If you only nebulise occasionally what difference does a minute or two make? What if you keep a little cash back and invest in a portable nebuliser as well?

Conversely, hoping a budget machine will work like a hospital model.

For those of you that have to nebulise more regularly or use two or three ampules then spending a little extra is always cost and time effective in the long run. You wouldn’t buy a Smart Car if you’re heading off-road!

Mismatching nebuliser accessories and units.

In some circumstances this can work. However, manufacturers invest a great deal of time and expense developing their nebulisers and accessories to provide you with an efficient, effective therapy. It’s not like a scarf where one size fits all!

Buying a travel nebuliser with a car lead and battery when you never really stray far from home.

Pocket nebulisers and travel nebulisers really can give you the freedom to get out and about. When choosing your nebuliser, be realistic. A Battery that is never used may not work 12 months after purchase.

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Thinking your nebuliser isn’t working properly when you really should be ringing your G.P.

This is just one of the reasons why health professionals are reluctant to recommend home nebulisers. If after your therapy you feeling no benefit, call for medical advice. Nebulisers can fail but as you are no doubt aware, anyone with a chest condition is vulnerable to infection and your health can quickly deteriorate.

Boiling non-boil-able medication chambers.

You won’t be the first. Boiling can extend the life of some medication chambers but it will completely destroy others! Good practice is to keep a spare. Always read the instructions or feel free to call us for advice.

Finally, letting the pan boil dry when boiling those that are!

We’ve all done it, whether it’s a medication chamber or an egg. It’s dangerous, expensive and messy so please do be careful!Guest

When your the only patient #NRSconf17

Today I had the most amazing experience and was able to co-present at the NHS Research Scotland conference in Perth.

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In the lead up to the conference I was so nervous and got myself  a little bit worked up. Looking back I had no reasons to be nervous or worried. I could rationalise why I was feeling nervous and that was because this would be the first time that my 2 worlds were coming together. I do a lot of public speaking, and lectures but it has been for the Asthma UK Centre for Applied Research and associated groups but this was the first NHS event. I was worried that because I was exposing myself to people who are potentially colleagues and people who see me in a professional capacity rather than in a patient capacity. I have always been very open the majority of the time about my health and thats mainly because I can’t hide my asthma and the attacks I have because I get admitted to the hospital I work in but speaking at this event it would be to people who I see when I am in ‘nurse’ mode and not ‘patient’ mode but today I was in patient mode in front of people who normally see me in nurse mode. I got over myself and a restless evening yesterday worrying I was then excited this morning and was really looking forward to the conference.

It was such a good experience being able to share why I get involved in research and some of the projects I have worked on and the evolution of the SPEAK Asthma group within AUKCAR. The time went so quickly. I had so much fun. It was a little daunting at the start as our group was fairly large and had been booked up really quickly so being up on the stage of the main auditorium was a little bit terrifying but once we got into the swing of it you don’t see all the faces looking at you and just enjoy it. It was great to see James Cant again. He used to be part of the British Lung Foundation but he is now with the British Heart Foundation and chaired our session.

The feedback I got from people who attended our session was amazing and all really positive. It was strange being the only ‘patient’ in a session which was titled “Patients at the heart of research”.

If anyone has ever been given or asked to speak at such events but it nervous about it- don’t be and take the offer up. It was one of the most enjoyable and rewarding days. Being able to make links with people who want to spend their careers making the lives of people like me better. Being able to give back and help people is so amazing, it really puts a huge positive on what has been a pretty negative disease in the way it has impacted my life but doing events like this is so worthwhile and makes all the hospital admissions and traumas worthwhile when you can just get up talk and enjoy yourself.

The achievements of some people in their careers and listening to the research they do is fascinating because when researchers speak they speak with so much passion and enthusiasm about their projects it makes you feel enthusiastic to help them with patient and public involvement for their project.

As you can tell I am on a high after today and I am really wishing I hadn’t got myself all worked up and spend lots of time writing and rewriting what I proposed to say- of course I said none of what I had written but I was able to say what I wanted which is all that matters!!!

Guest Blog- Hay

In my previous post about steroids I said there would be a guest post. A good friend of mine Hay who also has brittle asthma and goes to the hospital in Southampton I used to go to has just had her life turned upside down due to the medication she depends on for her brittle asthma (as though having brittle asthma was plain sailing!!). It is so good to have people around you who understand what it is like to have brittle or difficult to control asthma and I am so thankful for those friends I have made as a result. So here is Hay- I always like a photo it sort of makes it feel more real and you know who has written it. Of course as it is winter it is a very appropriate photo of Hay doing a #scarfie for Asthma UK.

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I hope you enjoy Hay’s post!!!

Oral Steroids – Prednisolone (although there are others brands)

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Common side effects to mention just a few:

  • Infections
  • Heartburn
  • Insomnia
  • Increased appetite
  • Nausea
  • Headache
  • Dizziness
  • Weight gain
  • Mood swings

This info and more can be found – http://www.asthma.org.uk

OK so most asthmatics if not all know what oral steroids are… we all call them evil, but seriously how many of us would be alive today without them?!?…. DEFINITELY NOT ME!… they are either little white tablets (taste horrendous) or little red / brown ones which are coated (gastro resistant) this is the version I take.

When having an exacerbation of asthma or chest infection this is one of the first things your GP will put you on or increase if you’re already on a maintenance dose, if however, you’re having a serious exacerbation then you will most likely need hospital treatment… most asthmatics know when it’s time for the hospital…

An exacerbation for me, my GP or Respiratory Consultant would increase my maintenance dose of 25mg (5 Red Tablets) to at least 40mg (8 Red Tablets) or 60mg (12 Red Tablets) they are normally taken all at once and first thing in the morning…

However, if you have Brittle Asthma (Like me) or Asthma that is difficult to control, many people call it different things… then you might be on what is called a “maintenance” dose of steroids, this is something you would take every morning despite whether you were having an exacerbation or not… I started having to take steroids everyday back in 2013 where I started on 7.5mg this very quickly got increased to 10mg and then again shortly afterwards was increased to 20mg after many hospital admissions in between… My last hospital admission my respiratory consultant increased my maintenance dose to 25mg… anyway my point is… (yeah Hayley get to it) in 4 years these steroids have done some serious damage to my bones despite regular DEXA Scans and calcium / Vitamin D supplements I have just been diagnosed with Osteoporosis and have multiple wedge fractures in my lower back I’ve also lost 2″ in height… (Below is part of my MRI scan)

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These were found accidentally during a recent admission into hospital with yet another exacerbation of my brittle asthma, I’m lucky enough to have a very patient respiratory consultant who took my complaints of horrendous back pain seriously and once my chest was more stable, ordered every scan under the sun (Ultrasound / CT / MRI) all of which I had to lay on my back which was excruciating, anyway except the ultrasound – all the other scans revealed I had multiple wedge fractures in my back… but how? I hadn’t fallen over or damaged my back in any way (you’d think you’d remember) I was then diagnosed with steroid induced osteoporosis… OUCH!!

This has quite literally changed my life

How life can change in seconds, I went from working 37 hours a week, and after 5 months of rehab I can only just manage 7.5 hours a week, I walk with crutches as these help steady me and I also have a back brace to help with the ongoing pain, and it also gives me the sense of feeling held together – I take a bone protection tablet now also, which will hopefully strengthen my bones and reduce the risk of more fractures in the future although this isn’t definite and there is no cure.

However, knowing what these little red tablets have done to my bones I still have to take them everyday…

 

Steroids aka “The Devils Tic Tacs”

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I have a guest blog post coming up soon from a good friend of mine who like me has brittle asthma but has recently had her life turned upside down due to the medication we rely on.

Everyone has heard of steroids and the majority of people will think there is only one type of steroid. The bad steroid, the anabolic one that the body builders abuse and that you hear about when athletes have failed drug tests. But these steroids are not the steroids which most people with asthma will depend on.

Unless you are newly diagnosed and on the first step of the Asthma Management Guide where you would only require a short acting bronchodilator then every asthmatics will be on some sort of corticosteroid. It will most likely be inhaled where the corticosteroid can be inhaled into the lung and will act locally in your airways rather than effect you systemically. This is why inhaled therapy for asthma works so well because you can get the medication to work directly where you want it.

However there is the odd occasion when you are climbing the steps on the asthma management guide and have the SABA, ICS at varying doses, LABA, antileukotrines, theophylline, nebulisers, antibiotics, antihistamines and you are still not getting any control. Your consultant may then be forced into using long term oral steroids. A short burst is great. A chest infection or asthma exacerbation 40mg of prednisilone is no bother and really won’t cause you much harm. It will do more good than harm. Your breathing will feel better and 5 days later your off them feeling great. But what happens when a short course turns into lots of short courses which turns into permanent long term steroids and then you find you have a maintenance dose and finding the lowest dose you can get to which can then become your maintenance- those 1mg drops when FeNo is ok is a great thought as its 1mg less you have to take of the ‘dreaded pred’.

You may have gathered already that I am not a fan of steroids. Others who have severe asthma or uncontrolled asthma will have lots of different names for steroids. The medication name for the oral steroid used most commonly in asthma in the UK is prednisilone (US readers its like prednisone but is not metabolised by the liver), however it has a lot of nicknames and nicknames surrounding some of its side effects.

Nicknames for prednisilone included: dreaded pred, devils tic tacs, asthmas happy pills, pred.

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The main reasons prednisilone gets such a bad rep when you have to take it long term is that as great as it is at helping breathing it is a killer on the rest of your body but hey they fact you can breathe better is worth the extensive list of side effects which have also earned themselves some great little nicknames like:

predsomnia: insomnia induced from being on long term prednisilone

predmunchies: the extreme hunger associated with long term prednisilone and the craving for carbohydrate or chocolate. Fruit and veg just won’t satisfy the predmunchies

moon face: the stereotypical shape your face goes when you are on long term steroids. How does everyone face end up the same shape- prepred you could all have totally different face shapes but predface you all look the same!

Over the years I have had a huge love hate relationship with prednisilone and prednisilone was responsible for my somewhat dubious compliance when I was younger. (I did stand up and talk about this in a room full of Asthma UK employees and the likes of Adel Mansur, Ian Pavord to name a few of the pioneers in asthma management and treatment who were in the room-it was a little nerve-wracking confessing). As I told the room I saw why prednisilone is needed to treat asthma and get on top of it but what happens when you have constant bad spells and keep being put on prednisilone, it makes you better and almost lulls you into a false sense of security because rightly the Drs don’t want you on it long term but when they take you off it your back to square one Whats the point in taking it in the first place to feel better for the time your on it for it to be taken away and you feel awful again. So I really didnt see the point of even taking it. I then got a new consultant who actually treated me as a person and understood me and my feeling towards steroids etc and we got a good balance and the compliance was no longer an issue (to note the dubious compliance was only with the prednisilone I always took my inhalers, anti histamines and other meds).

I still feel conflicted taking prednisilone even now. Me and my consultant disagree somewhat on it but I am of the opinion my work is important to me and I am all to aware I won’t be working for long unless there is a miracle so if pred means I can work then pred wins!!! It won’t be forever but doing FeNo I can see the good effect it has.

But with all the good and the easy breathing with it there is the fear that I think all consultants, asthma nurse specialists will have. For all the good pred does there are some devastating side effects which go with it. I won’t write much as it is explored in the next guest blog post but just briefly for me long term prednisilone has caused: osteopenia, adrenal insufficiency, immunosuppression, optic nerve neuritis, amenhorrea, thin skin, altered healing, reflux, myopathy, fluid retention, mild depression, insomnia. The list is fairly large and require medication to counteract some of the sideffects but I guess being able to take medication for the side effects of the prednisilone beats not taking the prednisilone and not being here.

Look out for the next guest blog coming up at the end of the week!

Getting Winter Ready!!

Winter is a time that everyone prepares for, whether it is stocking up on cold or flu remedies, starting to take vitamin C, looking out the hat, scarf and gloves or even just switching the central heating on. These would be the “normal” things anyone would be doing but when you asthma that is some what less than controlled, Winter is an entirely different kettle of fish. I put “normal” in inverted commas because everyone will have their own variation and everyones normal is different.

This winter has certainly started a little differently thanks to Hurricane Ophelia who was kind enough to cause great dust clouds and saharan dust being swept across the country so I hid inside while I waited for the winds to die down andante there were and it was “safe” to go outside I dug out my ski buff which wold filter the air as I was breathing! I potentially looked very suspicious wrapped up with a buff over my face in what was fairly mild weather and not weather I would ever have thought to wear a scarf in. Thankfully it has abated and the weather is more settled even though mild for mid october.

The next end of September beginning of October event is the annual flu jag. A must have for anyone who has a chronic disease such as asthma, diabetes, kidney failure. I also got my punomvax jab again as couldn’t remember when I last had it. There is a lot of question about having the flu vaccine or not having it. For me its a given I am going to have it no matter what. It varies the time of year I end up getting it mainly dictated on the dose of steroids I am taking. To high a dose and if I have infection. Thankfully this year I have been able to have it fairly early.

I would really urge anyone to have the flu vaccine if you qualify for it. There is always stories about people getting flu that had the flu vaccine but this is because the vaccine is only against the main strain suspected that year rather than against all flu. Hence when H1N1 was about there was a specific vaccine developed against it because of the severity and how contagious it was. I am very much of the opinion that any vaccine that is offered should be taken especially when you have a compromised immune system. I remember getting the H1N1 vaccine and the flu vaccine for that year because I reacted really badly to it and ended up in intensive care. The thought being that I probably already had a strain of flu but getting both vaccines tipped it over the edge and caused me to get really unwell. The reason I remember it so clearly (well some parts) is because I was in an isolation room in intensive care and anyone who came in had to wear mask, gown, hat, gloves the full works and I had no idea who was who. Who was a nurse, Dr, visitors. It was pretty scary but thankfully that didn’t last too long once I got better and could be moved from isolation. When you feel rubbish and have all these people coming at you who all look the same is surreal. So based on this I would always recommend getting vaccinated if you have the option to.

Along with vaccines there are the other precautions to take ahead of winter. Making sure you know what to do when your not well, when you asthma is causing you more problems, knowing what your action plan says and when to implement the different stages. If you don’t have one then you need to get one and see you asthma nurse to have this done. They can be invaluable when there are so many viruses and infections around.

Asthma is always such an unpredictable disease wether or not you have mild asthma to the most uncontrolled and severe and being prepared to manage it is key to getting through winter. Sometimes it is not so easy and it really a day by day battle but other days you are not bothered so much. Its the nature of asthma. I do think though when you have things in place and ready for the worst then you often would need to use the plans but not having anything in place can often mean you end up fumbling around to stick a plan together to get you threw.

Heres hoping for a stable winter and no major problems or set backs!!!

Fingers crossed!!!

Involvement in Research

Through my involvement in research with AUKCAR I have had the opportunity to meet other people who get involved in research because of a condition they have. Patient and Public Involvement (PPI) in research is slowly appearing in research in a range of different medical conditions. It doesn’t happen enough but it is good to see it! I had the pleasure of meeting Sue when we were both speaking at a PPI course run by the Edinburgh Clinical Research Facility. I asked Sue if she would mind sharing her experience of how she got involved in PPI and how she has found it. Below is her story about how she was diagnosed with multiple sclerosis (MS) and how she got involved in research, and how she has found it. It is great to be able to share someone else experience and from someone other than an asthmatic. I want to extend my thanks to Sue for allowing me to post this blog. This was a talk Sue did back in 2012.

“My life changed on a wet, cold, November day in 1996, when I rushed out to the garden to plant leftover bulbs. The following day I had a numb left foot but dismissed it as being nothing. The numbness continued up my leg, so I thought I had nipped a nerve when planting those stupid bulbs. I worked in Dollar, 37 miles away: it was busy, stressful and I was constantly on the run so did not have time for this stupid injury. I sought out a private physiotherapist hoping she would be able to release this trapped nerve, but when I made contact, she told me to go straight to my GP as she thought I had damaged my spine! I only had a numb leg. After work I headed for my GP in Edinburgh who told me to expect to have spinal surgery that night. He sent me to the Western General where they were waiting for me – seems as ridiculous now as it did then. 10 days later, still in the ward, thoroughly frustrated (so much so that the nurses called me Mrs P!), having had endless tests, the consultant told me I had had a neurological episode – (or clinically isolated syndrome to give it the correct term) which would resolve itself within 3 months. He was right, it did. But it returned 8 months later.

By this time I was working in Edinburgh and when I saw the consultant again in February 1998, he said he was very sorry but it was definitely MS and there was nothing he could do but see me in the clinic annually. He handed me the address of the MS Society and I left, got on the bus back to work and collapsed weeping in the arms of one of the staff! I knew nothing, less than nothing, about Multiple Sclerosis. Apart from breaking the news to my poor husband, the best thing I ever did was to telephone the Society and ask for relevant information to start my education into the disease I was to live with for the rest of my life.

Someone explained the categories that we group MS into and I was diagnosed with late-onset (I was 48), aggressive, relapsing/remitting MS. Within 6 months I could no longer cope with my career and began spending regular periods in hospital being treated with steroids – the only drug available at the time in this country. The relapses began to strengthen and lengthen until I had to spend the middle two weeks of any relapse holed up in my bedroom as I couldn’t use the stairs. Remissions were like gold, sometimes only 3 weeks long. I didn’t need my GP to tell me the outlook was grim, I knew I was getting weaker.

At the end of the 20th century, very little was moving in the MS research field. MS was neither attracting government attention nor recruiting the high standard of researcher required to move forward. Of course, I spent a lot of time reading up on the subject and quickly realised other countries were using new disease modifying drugs, banned in this country due to their cost. I was beginning to build up a head of steam and used my hospital stays to constantly question my consultant and his registrar – eventually they could be seen creeping past my room hoping I wouldn’t bother them again! But it paid dividends because, eventually, the registrar mentioned an old, cheap immunosuppressant drug used for transplant surgery that had displayed good results for MS. They decided, as long as I was willing to accept the risks, I could become a named patient. It was just at this time that that I had a catastrophic relapse and lost the use of my core muscles so could no longer walk. I was taken to hospital by ambulance to be assessed. That was one of the lowest points of my life. I lay in a side ward, unable to do anything, knowing that this was quite probably going to be my future, and my family’s future. It was decided that I should be transferred for rehabilitation to a dedicated rehab hospital and at the same time we all agreed that I should begin on that immunosuppressant.

For me that was a desperate time. It was an awful ward to be in, but thankfully the physiotherapy department was wonderful. A week later, after lots of work on my core muscles, I was tied to a standing frame for the first time and felt so tall, so far off the ground that I couldn’t believe it. Gradually I began the work of learning to walk again using parallel bars with my wheelchair being pushed behind me. It was so very hard to make my left leg move through to the front that I did not think it would ever happen. But it did and I decided that once I could walk enough steps with a zimmer, I could manage the journey from my bedroom to the bathroom so I told them I was going home. The consultant tutted and muttered and said he felt I should stay another week. My response was that on the whole, men found it easier to fall in with my wishes! So he gave in. Once home, I was so lucky to be given daily physio in my bedroom and, a few weeks later, using elbow crutches, I descended the stairs for the first time! What an amazing feeling to see my lounge again.

That little tablet had begun to work and I was aware that the relapses were less frequent and much less severe. Once I was able to get about a bit, with my husband’s help, I became more active within the MS Society. In 2002, an advert “Have your say in research” leapt out of the page of the Society’s newsletter and I immediately applied. I50 of us around the UK were accepted for training for the new Research Network. The Society had made the historic decision to involve people with MS in everything to do with research so that the projects they funded would have more relevance and make better use of scarce resources.   After training we were ready to get to work helping to review grant applications to the Society. Gradually I began to take on other work and through that found a channel for my frustration. Suddenly I was asked to speak to others about the Research Network. I was scared witless but so pleased that I managed it and from that grew a whole new confidence and purpose. The Research Network went from strength to strength and I began to be asked to respond to breaking stories about MS research on television, radio and newspapers! Amazing. I thought my days of using my brain were well behind me but, with the support of the Society in Scotland and London, I was encouraged to take up the many challenges they sent my way. I have continued to speak as a patient rep whenever I’m asked and have become involved with the Scottish Stem Cell Network for whom I have since carried out regular speaking engagements in their outreach programme. I’ve chaired meetings (one of them in the Scottish Parliament), I have worked on panels and on reference groups and am now part of the Steering Group that guides the development of the Research Network. I’ve been privileged to meet with many outstanding MS researchers and have listened when they speak about their amazing work. I’ve even spoken on the same platform as some of them.

Am I the same person who lay in a darkened room in the Western General unable to walk or to see any future? I hope not. I have, through all this fascinating work learned about my own disease from those whose lives are spent working to find new treatments and that in itself has been payment beyond price for the small amount I do. And through these difficult years, my husband and family have been my rock and have continually supported my wish to meet the challenges the MS Society has laid down. Without that amazing support all this would have been just a dream. The Research Network came at just the right time. Those cheap tablets I have been taking since that long spell in hospital, have kept me out of the ward since then and have made my MS less aggressive so that it can be managed. Do I still have bad times? Yes I do – regularly. My MS has moved on to being secondary progressive so that the damage is now permanent and the disease path is downwards. But on the good side, there are less violent ups and downs and the whole thing is calmer. When I look back over a year gone, I can do less physical things than I did last year and of course that will continue. How long I can remain active, using what ability I have left is anybody’s guess but I’ll keep on until it beats me.

MS research has moved on incredibly in this new century to the extent that we are on the cusp of great life-changing results with the use of stem-cells. It is a very exciting time for people with MS, but developing research outcomes so that they can be used in the clinic is a phenomenally expensive process and takes years. The Society supports much of the quality research being carried out in this country but it is of course limited to the amount of funding available.

Last autumn I was interviewed by the Society for one of two lay places on the Board of Management of the MS Translational Research Centre in Edinburgh. I am very proud that I was accepted because I have great faith in the work that is taking place there. I attended my first all day Management Board Meeting last December – two MS Society staff up from London, the other lay member, 6 international professors………..and me! Even though it was a little bit terrifying having to contribute and discuss in such august company, it was an amazing day in an amazing new building. The mind-blowing work that is happening there, in close cooperation with the Cambridge Myelin Centre, left me breathless, and excited for everyone who is suffering MS and for all those yet to be diagnosed. I am therefore in a perfect position to assure you that the results Hazel speaks of are absolutely true. I believe our future is contained in that building behind the Royal Infirmary.

I am now a grandmother of two and naturally I am very concerned that this vile disease will visit one of them. But, because of my experiences, I trust the future will be very different for those little ones if they have to live with this disease. Many years in the future, I think science will look back and note that the biggest break-throughs came from this period of research.

The MS Society staff have been my mentors and are always ready to help if I have problems. Yes, I have tried to make the most of what was on offer but I thank them for presuming I still have something to give when I have constantly doubted myself. Without the MS Society and the Research Network, life for me and my family would be very different. They have quite simply saved my sanity.

(this extract below is taken from a more recent talk Sue did)

In 2014 I was elected to the Scotland MS Council which was a huge sideways step for me, having been immersed in research for so many years.  Here was the actual workings of the charity, the branches and committees, the fundraising and staffing, none of which I had a clue about.  I am still learning and am at present awaiting the outcome of my re-election (it is a 3 yr term of office) which was voted on by the membership.  If I am fortunate enough to have been elected I will serve a further 3 years and hopefully by that time, I might understand what I’m doing!

​I continued my work for the Reserch Network and, as you heard, it was at my annual review that the registrar asked if I would be interested in meeting A who is a Patient and Public Involvement advisor for the CRF.  I was delighted to learn that so much was going on in the wider world and happily agreed.  We met and had our coffee and I was impressed with the work already achieved so, hoping I could be of help, signed up.  A is amazing and very impressive but it  is ridiculous that she is not properly funded – that makes me angry.  I am enjoying the various tasks I am given and it is good to know that my experience can be put to good use in the wider world.

I hope that tells you a little of what my life with MS has contained.  Unfortunately, I continue to go gently down the disease path no matter how much I fight it but I will keep kicking on as long as I possibly can!  I’ve been so lucky to have had the chance to use this vile disease to represent others and to try and educate both researchers and the public about MS.  It is a small charity in comparison to the huge ones like cancer.  100,000 folk have MS in the UK, 11,000 of them in Scotland, making us the MS capital of the world – the worst place to be is Orkney!”