MS Ireland
Informing, Supporting and Caring for the MS Community
The Multiple Sclerosis Society of Ireland ("MS Ireland") is a charity, registered in Ireland as CHY05365, with its head office at 80 Northumberland Road, Dublin, Ireland, email: info@ms-society.ie.
You should know what information we collect and how we use it.
The objectives for which MS Ireland exists are:
· to facilitate people with MS to control their lives and environment, to live with dignity and participate in the community,
· to provide support for the families and carers of people with MS,
· to co-operate with the medical, scientific, social and caring professions to promote scientific research into the cause of, cure for and management of MS, and the alleviation of medical and social symptoms,
· to exchange and disseminate information relating to MS, and
· to provide an identifiable focal point by developing an efficient, effective and caring organisation to serve the needs of people with MS.
MS IRELAND is committed to protecting the privacy of people who use our services, employment candidates and current employees, contacts, fundraisers, business partners, and other third parties we deal with, such as family members.
This Privacy Statement details how MS IRELAND collects, uses, discloses, transfers and stores your personal information. It applies to personal data about you that we collect, use and otherwise process in connection with your relationship with MS IRELAND.
MS IRELAND is a nationwide charity that operates from its headquarters in Northumberland Road in Dublin, the MS Care Centre at 65 Bushy Park Road, Rathgar, Dublin 6, and through employed regional workers and offices. MS IRELAND also has a network of Voluntary Branches, each of which processes personal data submitted to it directly and/or through a client's consent when he or she has ticked the "I would like my details sent to the nearest Voluntary Branch" on MS IRELAND's Lifetime Membership Form or the MS Care Centre Contract of Care. Any personal information processed by MS IRELAND in connection with this Privacy Statement is ultimately controlled by a MS IRELAND as the "data controller" as provided for under the General Data Protection Regulation ("GDPR"), the Irish Data Protection Acts, 1988 to 2018, and the Data Protection Commission (DPC) Guideline for the Charity and Voluntary Sector.
The elected Secretary of each Voluntary Branch is the controller of the personal data processed in that branch.
You may request information about the personal data that MS IRELAND holds about you by emailing us at dataprotection@ms-society.ie or writing to us at 80 Northumberland Road, Dublin, Ireland.
Please note that throughout this Privacy Notice the word "website" refers to https://www.ms-society.ie.
1. INFORMATION COLLECTED BY USING MS IRELAND WEBSITE
1.1 You are not required to provide any personal information to access public areas of MS IRELAND's website.
1.2 However, when you visit the MS IRELAND website we record your IP address and details of your visit, including the date and time. An IP address is an assigned number, similar to a telephone number, which allows your computer to communicate over the internet. In addition to your IP address the following technical information will also be collected: your login information, browser type and version, time zone setting, browser plug-in types and versions, operating system and platform, information about your visit including the full Uniform Resource Locators (URL), clickstream to, through and from the website (including date and time), pages viewed, download errors, page interaction information (such as scrolling clicks) and methods used to browse away from the website.
1.3 MS IRELAND uses this IP information for its legitimate interests to compile statistical data on the use of our website and to track how users navigate through our website in order to enable us to evaluate and improve.
1.4 Personal information such as names, addresses, email addresses, telephone numbers, and other personal data relating to services that we are providing to you will only be collected from users of the website who voluntarily input such information.
1.5 Focus Limited website designer in Bristol, England, acts as a data processor for MS Ireland in relation to the MS IRELAND website. In this capacity, Focus has sight of data regarding: donations, staff, the personal information of clients (including names, addresses, email addresses), enquiries and memberships.
2. CONTACT SALESFORCE DATABASE
2.1 We may retain information you have provided us with in MS IRELAND's contact database. Information that we typically hold in our database includes:
2.1.1 your contact information, including your name; job title; organisation's name; address; phone number(s), email address(es) and other identification information;
2.1.2 the area(s) that you have an interest in,
2.1.3 historical fundraising activity for MS IRELAND.
2.2 Once your details are included in MS IRELAND's contact database we may also record details of any:
2.2.1 MS IRELAND's mailing lists you have subscribed to or unsubscribed from;
2.2.2 mailings (including services updates and event invitations) we have sent you;
2.2.3 hyperlinks you have clicked in any mailing that we have sent you;
2.2.4 meetings we have held with you;
2.2.5 event invitations you have replied to; and
2.2.6 events you have attended.
2.2.7 your care records.
2.3 From time to time we may ask you by email to review your contact details and preferences, and update them as necessary. This not only helps us to keep the contact information we hold about you up-to-date, it also ensures that we only send you information that you have requested and/or is relevant to you.
3. INTERACTIONS WITH MS IRELAND
We retain personal information relating to interactions between MS IRELAND and people who use our services, clients, job applicants and current employees, contacts and business partners, including information relating to the services that we provide. We only retain information that is necessary for the purposes set out in this Privacy Statement.
4. PROCESSING OF YOUR PERSONAL INFORMATION
4.1 MS IRELAND, in the MS Care Centre, the regional offices, and throughout its network of Volunteer Branches, will only collect and process personal information where it has a legal basis for doing so. This includes where MS IRELAND is providing a service to you or fulfilling a Care Centre or Regional Office contract with you, where MS IRELAND has to comply with a legal duty, where you consent to the collection and use, where MS IRELAND has a legitimate interest in collecting and processing the personal information, or where the processing is necessary in the public interest. When personal information is processed, the basis of processing will be in accordance with relevant Irish and EU data privacy laws, our legal obligations and to meet our information security requirements.
4.2 MS IRELAND uses personal information which we have collected from you in order to:
4.2.1 provide you with a more tailored and effective service and/or care;
4.2.2 perform analysis aimed at improving our products, services and technologies for people with MS;
4.2.3 communicate with you through certain mandatory service communications such as welcome letters, appointment reminders and our terms and conditions;
4.2.4 communicate with you in connection with any services that we are providing to you and otherwise perform the services for you that you have engaged us to provide;
4.2.5 ensure compliance with regulatory requirements and applicable law;
4.2.6 provide updates and newsletters, including our MS News magazine by mail and our electronic newsletter, and invitations to events and meetings;
4.2.7 carry out administrative purposes (including within the MS IRELAND regional offices and the network of Voluntary Branches), which may include, for example, accounting and billing, auditing and identification checking;
4.2.8 undertake systems testing, maintenance and development in order to ensure network and information security;
4.2.9 to let you know ways you can get involved in our fundraising and campaigns;
4.2.10 when you are making a donation, registering for a campaign or event, as appropriate, you may be asked to provide personal details such as name, email address, postal address, phone number or payment information as needed;
4.2.11 prevent fraud; and
4.2.12 market our services and products to you where MS IRELAND has a legitimate interest or you have consented to us doing so and in accordance with your preferences.
4.3 MS IRELAND will only collect, use and otherwise process information revealing racial or ethnic origin, political opinions, religious beliefs or relating to your health or sexual orientation or otherwise which is treated by applicable data protection laws as a "sensitive" or "special" category of personal information, where and only to the extent that you have given your explicit consent unless we are otherwise permitted or required to collect, use and process such information under applicable data protection laws, including but not limited to where this is necessary in connection with providing our agreed services to you.
4.4 Any data collection that is optional will be made clear to you. However MS IRELAND may need to collect and process personal information for certain legal compliance purposes or in order to perform certain services for you, including compliance with legal requirements relating to our anti-fraud, anti-money laundering or 'know your customer' obligations. If you choose not to give us this personal information then it may delay or prevent MS IRELAND from meeting MS IRELAND's obligations or it may mean that MS IRELAND cannot perform certain services for you. MS IRELAND will advise you if this is the case.
5. MARKETING and INFORMATION COMMUNICATIONS by MS IRELAND
5.1 We may wish to use the personal information that we collect about you to provide you with relevant marketing communications. This may include sending tailored direct marketing and information e-mails and other communications relating to our services or those of our MS IRELAND regional offices or Voluntary Braches, and sending you invitations to seminars and other events related to the care of yourself or your family member.
5.2 We shall only send such marketing communications to you to the extent that doing so is in the legitimate business interests of MS IRELAND or where you have consented to us doing so. As set out in the Data Subjects Rights table below, you may withdraw that consent at any time by contacting us at dataprotection@ms-society.ie. In addition, each electronic communication that you receive shall have a very clear "unsubscribe" option, which will allow you to stop receiving similar communications in the future.
6. EXCHANGE OF INFORMATION
6.1 MS IRELAND shares data between our regional offices and our Voluntary Branches, where necessary, for the purposes outlined in this Privacy Statement. MS IRELAND ensures that your personal information is shared in accordance with applicable data protection laws, at all times providing protection to your personal information and your rights.
7.1 MS IRELAND has relationships with third parties in order to provide services for people with MS, such as medical professionals. In some instances we may disclose your personal information to third parties where this is necessary to perform the services for which you have engaged MS IRELAND or otherwise in furtherance of an outsourcing or other data processing arrangement. In those circumstances MS IRELAND will ensure that the third party is contractually bound to only process personal information in accordance with applicable data protection laws and with MS IRELAND's specific instructions and requirements, and at all times in a manner that protects your rights under applicable data protection laws. Our suppliers and service providers will be required to meet our standards on processing information and security. The information we provide them, including your information, will only be provided in connection with the performance of their function. They will not be permitted to use your information for any purposes other than those outlined in this Privacy Statement.
7.2 In relation to any other third parties, MS IRELAND will only disclose or transfer your information where you have given your consent or where we are required to do so by law or other regulatory code or practice.
7. TRANSFER OF INFORMATION ABROAD
8.1 In very rare circumstances, personal data may be transferred to or accessed from countries whose laws provide a level of protection for personal data, not always equivalent to the level of protection that may be provided in your own country. In particular if you are located inside the European Economic Area ("EEA") your personal information may be transferred to a country outside of the EEA.
8.2 MS IRELAND ensures that cross border transfers comply with all relevant laws and regulations and in addition, we enforce the highest privacy and data management standards across all our offices through MS IRELAND Data Protection Policy. A copy of that policy may be obtained by contacting MS IRELAND at dataprotection@ms-society.ie.
8.3 Unless:
8.3.1 you have expressly consented to the transfer of personal information;
8.3.2 the transfer is necessary for the performance of the services for which MS IRELAND has been engaged or the conclusion or performance of a contract concluded in your interests; or
8.3.3 the transfer is otherwise permitted by applicable data protection laws,
MS IRELAND will only transfer your personal information to a country that is deemed to have an adequate level of protection under the applicable data protection law or otherwise where MS IRELAND has put in place adequate safeguards to protect the personal information. In particular where MS IRELAND sends your personal information outside of the EEA, MS IRELAND shall only do so where the recipient of the information is subject to:
8.3.4 binding corporate rules;
8.3.5 standard data protection clauses approved under applicable law;
8.3.6 an approved code of conduct; or
8.3.7 an approved certification mechanism.
8.4 Further details on the safeguards adopted by MS IRELAND may be obtained by contacting MS IRELAND at dataprotection@ms-society.ie.
8. DATA RETENTION
MS IRELAND shall only retain your personal information for so long as there is a reasonable need to retain the information for the purposes set out in this Privacy Statement. Further details on MS IRELAND's policy in relation to retention periods can be found in our Record Retention Policy. A copy of that policy may be obtained by contacting MS IRELAND at dataprotection@ms-society.ie.
The MS Care Centre is registered as a provider by the Health Information and Quality Authority (HIQA) and complies with HIQA's Information Management Standards for National Health and Social Care Data Collections.
9. PROTECTION OF YOUR PERSONAL DATA
MS IRELAND is committed to protecting the security of your personal information. We use a variety of security technologies and procedures to help protect your personal information from unauthorized access, use, or disclosure, across all of our computer systems, networks, website, mobile phones, regional offices and Voluntary Branches.
Data Subject Rights
You have rights in respect of the personal data that we collect and process concerning you.
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Access |
You are entitled to details concerning the processing of your personal data. This includes details of the data being processed, the purposes of the processing, any recipients of your data, the period for which the information is processed, the source of the information, any international transfers of the information and how we protect it. You may also request details of any automated decision making, including profiling, of your personal data. You are entitled to a copy of the personal data we process about you. |
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Corrections |
You are entitled to have any incomplete and inaccurate personal information held by us corrected on request.
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Right to be Forgotten |
In some cases, you may request to have your personal data erased where the data is no longer necessary for the purposes for which it was collected and/or processed or you withdraw consent to our use of it. We may advise that we must continue processing your data if there are grounds other than your consent for processing your data, where processing is in compliance with a legal obligation, for reasons of public interest or for the exercise or defense of legal claims. |
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Restrict Processing |
You can ask us to restrict the processing of data MS IRELAND holds about you if you dispute the accuracy of the data we process about you or if you have objected to the grounds upon which we process the information. Where you have asked us to restrict processing the information we shall only hold, process and erase the information as permitted by you or as permitted by the Data Protection Acts, 1988 to 2018 or the GDPR. We will advise you if we do not agree with your request. |
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Data Portability |
Where processing of your data is carried out by automatic means, you are entitled to receive a copy of that information in a machine-readable format and for that to be provided to another data controller, where technically possible. |
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Object |
You may object to MS IRELAND collecting, using and otherwise processing your personal data where the basis for the processing is MS IRELAND's legitimate interests or the processing is in the public interest. In such circumstances we shall cease processing your personal information unless we are legitimately processing the information on a different basis, there are compelling legitimate grounds for continuing to process the personal information, or we are otherwise permitted to under applicable data protection laws, which MS IRELAND will so advise. |
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Withdraw Consent |
Where you have given us consent to process your personal data for any of the purposes outlined in this Privacy Statement and we have no other legal basis for processing, you shall be entitled to withdraw that consent.
datadublin@MS Ireland.law. |
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Right to Complain |
If you have concerns or complaints regarding this Privacy Statement or the manner in which MS IRELAND collects, uses and otherwise processes your personal data we would like to hear from you. If you consider that we have not processed your data according to these rights and we have not addressed your complaint in this regard, you are entitled to lodge a complaint in Ireland to the Data Protection Commission at www.dataprotection.ie. |
This Privacy Statement may be updated from time to time.
The current version of this Privacy Statement can be found on the MS IRELAND website or may otherwise be requested at dataprotection@ms-society.ie.
This policy covers the use of cookies on the MS Ireland website
This policy aims to inform MS Ireland website users that cookies are used on the website and how to go about opting out of cookie usage.
This policy applies to all visitors to the MS Ireland website
Cookies are small text files that are stored on your computer by the websites that you visit. Cookies enable some information about your visit to be recorded and enable websites to recognise a user anonymously based on the information stored in the cookie.
Most websites today use cookies. Cookies are really useful for website providers to monitor how their site is used and what information or content is the most popular. This can help improve content created and how navigation of the site is handled. It can also be used to tailor your experience and ensure that the most relevant information is presented to you based on your preferences. Some cookies are used to enable essential functionality of the website such as shopping or to remember your login details for later visits.
Cookies can be either ‘session’ or ‘persistent’. Session cookies are only stored for the duration of usage of the site and are deleted once the browser is closed. Persistent cookies can remain on your computer for longer specified periods.
There are two types of cookies: First-party cookies that are set by the site you are visiting and Third-party cookies which are set by other sites that have features embedded on the site you are visiting – such as advertisements or YouTube videos.
MS Ireland uses both session and persistent cookies on our website. By using this website you are agreeing to the use of cookies as described in this policy. Our cookies are not used to identify you personally but rather to improve your experience on our website.
We use the following local cookies:
• Google Analytics to track users as they navigate the website – these cookies are named: _utma, _utmt, _utmb, _utmc, _utmz
• AddThis – provides access to social sharing buttons for Facebook, Twitter, etc
• Cookies to allow use of the shopping cart and to process payments
We also use Third-party cookies:
• YouTube to embed video content into our site
• DoubleClick and Google Analytics to allow us to advertise and monitor performance on Google
You can choose not to allow cookies to be used on your machine or delete cookies that are already there. This may have a negative effect on your browsing experiences as a lot of website functionality requires the use of cookies and so some options may no longer work.
Cookies can be controlled through the settings on your browser, use the link specific to the browser you use to get information on how to do this.
• Firefox
MS Ireland use embedded content on the site. You can view the cookie policy of our providers
• YouTube
• AddThis
There are a variety of free tools available that you can use to block cookies to help protect your online privacy. These are listed here for information purposes and do not represent an endorsement of any particular product.
• Ghostery
Contact Information
If you have any questions in relation to this Privacy Statement please contact us at dataprotection@ms-society.ie.
Watch talks from Professor Gavin Giovanonni; Dr. Jens Bansi; Dr. Kate O Brien, Genomics Medicine Ireland; Dr. Sabina Brennan.
Download MS Ireland's Care Centre Business Case, presented to TDs and Senators in Leinster House.
Latest news and research developments delivered to your email inbox at least once a month.
We don’t always have the words to explain how we’re feeling. But unless we do, how can we ever really process these emotions? This week, Christina McDonald and Mary Devereux consider anger. Grieving can make you so angry. It comes in different forms; it can frighten you because you lose control like you never would have in a previous life. Anger is one of the stages of grief that we find ourselves re-visiting. It can be a difficult stage of grief that can creep in at any time. We can find ourselves grieving and angry over our lives pre-MS. You can find yourself alone at night, crying over feelings of worthlessness, plagued with self-doubt and questioning what your purpose in life is now. Sometimes you can even find yourself grieving the old you who didn’t get angry very often. We feel that anger can take control of our thoughts about life, ourselves and others around us. MS can take a lot away from you, so you become angry over the lack of freedom and spontaneity in your life, when every-little-thing must be planned. “I don’t even have the satisfaction to even walk out in an argument or drive off to calm down. My legs don’t work so fast anymore; MS cognitive issues took my car licence and my career so I am always coming back with my tail between my legs (so to speak).”- Mary You think about what you’re putting your loved ones through because they are also suffering, watching you from a distance. Sometimes you’re so angry with them you’re watching them thinking their life is going on without you. Deep down you know they have their own demons, that they’re trying to come to terms with the possibility of losing Mum or Dad or their partner. Losing the one they knew before the disease took hold. All you want is to be that person again. You can become angry when looking at friends and people your age- thinking they are doing GREAT things with their lives and you feel left behind. We know, we know... life is not a race and we shouldn’t compare ourselves to others. But for us it’s only natural when you’re living with a chronic illness. You can even find yourself getting angry with the people who “know that one other person with MS”. They tell you stories about how an “all green diet can cure MS”. Yes! CURE MS! This can make you so angry because if someone has met one person with MS... they know it all. Despite me knowing no two people with MS are the same. “Now, when people tell me about their miracle cure, the anger inside me turns to laughter and I just think to myself, if only I ate more lettuce, broccoli and peas, I’d be cured…. Not only that but I’d be carrying this miracle cure and making millions. Why didn’t I think of this before?!” -Christina
Internet services and supports for family carers Do you have 10 minutes to answer a few questions about internet services and supports for family carers? We know that a lot of family carers rely on the web for information, supports and socialising when unable to leave the house due to their caring responsibilities. The partners in National Carers Week would like to know a little bit more about how family carers use the internet supports available, and what supports aren't available but should be. The survey should take about 10 minutes and is completely anonymous. If you have any questions, email Zoe in Care Alliance Ireland (the organisation who coordintates the week) on zoe@carealliance.ie. Click here to take the survey: https://www.surveymonkey.com/r/NCW2019
This week we get to ‘listen in’ on a conversation between Grace Kavanagh and Keith Byrne. They’re talking about the good days and the bad days, the ups and downs of life with MS and life in general. What does a bad day feel like to you? Grace: Everyone’s MS is different and so is everyone’s version of ‘bad’ days. I have been diagnosed with MS for 13 years now. Over that time my version of ‘bad’ days has changed as my MS has progressed. To be honest at this stage I don’t even rate days as good or bad, I just go with it and do what I can. I think that there are different kinds of ‘bad’ days. There are days where my body just won’t cooperate and I barely have the energy to blink. For me there is not a huge difference between physically good and bad days as I always struggle with fatigue and mobility so I try not to focus too much on my physicality. The worst for me are days when I am emotionally exhausted or just cannot motivate myself to engage with the world around me. Keith: Everyday there are a couple of hours where I just have to zone out. I’m unapproachable, I’m cranky and I can barely string a sentence together. My brain feels like it needs to shut down and reload. This is something I’ve come to accept rather than fight against. I don’t know if accepting fatigue is the right approach to take, however, it holds me in good stead if I manage to have an impromptu nap every other evening. I see my brain as a battery and time-out helps it re-energise albeit briefly. What works for you on bad days? Grace: I’ve had a lot of therapy and mindfulness practice to try deal with the negative spiral that can go on in your head when things are not going too well. I have a number of “distraction techniques” (fancy way of saying I bury my head in the sand for a bit) that take my mind off the negatives. For example I spend time with my cat, he always makes me laugh. I enjoy mindful colouring and play games on my phone. I can vastly improve a bad day by accepting my limitations and adjusting my plans for the day accordingly. That may well mean watching TV in bed but giving myself permission to do so means I’m not feeling guilty all day on top of everything else. Now that is an easy option for me since I don’t have a job to go to or children to look after but Keith you have both of these - how do you cope when downing tools isn’t an option? Keith: I have to admit it’s rare that I can take time out to look after myself as I know I should when having a ‘bad’ day. Having a full-time job and a toddler at home doesn’t really allow for it. I’ve tried therapy and mindfulness too. I did find them beneficial but when fatigue really kicked in, I lost interest. Although I know it’s not possible for many people with MS, keeping myself as active as possible is the best way I find to tackle the bad days. The high I get from running really stands to me. It helps me think straight and de-stress. I’m at a stage in my life where stress is unavoidable but the endorphins triggered by running at least make it manageable. Easier said than done particularly when fatigue and multiple other symptoms have you wiped, however, I would recommend anything that gets the brain pumping as a way to tackle the bad days. Asking for help Grace: We are both lucky enough to have understanding partners who pick up the slack for us when we are struggling. Do you find it difficult to ask for help? Keith: In some ways I’m a very stereotypical man and don’t like asking for directions. When we’re driving somewhere I’m unfamiliar with I will always rely on my wife to have Google Maps open and direct the way without asking her directly. It’s the same with asking for help. Sometimes I need a steer in the right direction and she’s the one who provides it. Yet I would never say directly “I need help” even when it’s blatantly obvious! It is important that someone close to you has an understanding of how you are affected by MS especially as we are all affected by it in so many different ways. Advice/Suggestions: Grace: I find a gratitude diary can be helpful when I’m in a dark mood. Writing down 3 things I am grateful for reminds me that there are good things in my life. Talking to someone who understands and has MS has been a big help to me; we can empathise with each other and maybe even laugh when brain fog hits and we can’t remember what we were talking about. Listen to upbeat music or watch funny videos on the internet. I read a blog somewhere that suggested having an emergency ‘bad’ day kit. You could put in a copy of your favourite book, chocolate or some other treat, perhaps your favourite movie. If at all possible get out of bed and get dressed. Try to achieve one small thing in the day, it might make you feel better. What would you suggest as a survival kit for bad days Keith? Keith: Some really good points Grace. I also find writing very therapeutic and the best possible remedy for brain fog. The thesaurus is my friend when I know what I want to say but just can’t think of the word – this happens easily one hundred times a day. Also, being kind to yourself is very important especially when we’re having a tough time of it. I’d definitely have a playlist of my favourite songs for my ‘bad’ day kit and maybe a YouTube playlist of historical sporting moments. Actually, on that note, I think I’ll watch Ireland beat Italy in the USA ’94 World Cup. I wonder if Paul McGrath still has Roberto Baggio in his pocket :)
Living with a Long Term Health Condition Self-care group programme that teach practical health-related skills. This programme is for adults 18 years and over. It is suitable for you if you are: living with one or more long-term health conditions (For example stroke, diabetes, heart failure, asthma, COPD, arthritis, Multiple Sclerosis, muscular dystrophy, depression, arthritis, Crohn’s, Colitis) caring for someone with a long-term health condition, depression, intellectual disability or dementia feeling low, anxious, unhappy or depressed Instructors/Tutors are specially trained to facilitate the workshops. All have personal experience of living with a long-term physical or mental health condition. Cost: €20 for 6 sessions, course handbook and refreshments Waterford: Sacred Heart Family Resource Centre, Richardson’s Meadows, Kilcohan, Co Waterford. Starts: Thursday the 11th April from 11am-1.30pm for 6 weeks. Book a place by ringing Joan or Gillian on 051 306728 or via Eventbrite Wexford: South West Wexford Family resource Centre, New Ross, Co Wexford. Starts: Monday 29th April 7pm-9.30pm for 6 weeks. Book by ringing Lana or Denis on 086 8163772 or via Eventbrite Carlow: Bagnelstown Family Resource Centre, Bagnelstown, Co Carlow. Starts: Friday the 3rd May from 10.30am-1pm for 6 weeks. Book by ringing Lana or Denis on 086 8163772 or via Eventbrite Part funded by the Lottery Grant from South East Community Healthcare (HSE)
This week Rosie Farrell shares with us how she has learnt the art of listening to her body. Ah, those three little words. The uncompleted tasks and treasures of today hang on those words. Like a carrot on a stick, they lure me into the future by promising me what the now can't deliver. Tomorrow I will… They may just be three little words but to me they mean the world because within them they hold hope, hope that tomorrow the pain will be better, that I'll manage that walk, hope that I'll finish that painting I've been too sore to work on. Hope is my fuel and it drives me through the tough days. There are never any guarantees with MS. I always have several back-up plans because I can often wake from a fitful sleep to find my pain has soared or my mobility has plummeted. I think that's the hardest thing about this disease, trying to grasp its ever-changing mood and adapt when the goalposts change daily, hourly even. To future-proof myself and how erratic my MS can be, you will always find a wheelchair in my car boot, or if you see me without a walking stick, there is always one folded up in my handbag, because if there's one thing I don't want this disease to take any more of, it’s my freedom. There's a real stigma around using a wheelchair though, and it doesn't do us any favours. I don't know how many times I've heard the word wheelchair used in an almost-end-of-the-road context where MS in concerned. And when we use it that way I don’t think we realise how much that ostracises those of us using wheelchairs, as if our MS is this separate disease - the worst-case scenario. Because of this I ended up in one of the loneliest places of my life because I had no idea that someone with relapsing-remitting MS may need a wheelchair and that using one is often just the sign of an unlucky relapse - a badly placed spinal lesion in my case - and not always a sign of progression. A negative attitude towards the wheelchair is a society-wide issue really. Every time I find myself unable to enter a building, it feels like society screaming at me to go home, to not bother. But using a wheelchair is NOT the worst thing that MS can do to you and if accepting its help is the difference between leaving the house or not, if it means you can board your flight and start your holiday without extreme fatigue, is it not worth it? If I’ve learned one thing it’s that my wheelchair only ever enables me, it’s the badly designed country we live in and the stares of people who aren’t used to seeing enough wheelchairs in their daily lives for that exact reason that disables me. The chronic pain I’ve developed with this disease is what I struggle most with and I’m so tired of popping pills to keep the beast at bay. I plan my tomorrow always mindful of that. Even now I’m writing this from the couch in fits and bursts after a dreadful night’s sleep, willing my painkillers to kick in. But this is where plan D comes in, this is where I snuggle up on the sofa with my husband and our little dog Trixie and our day bursts to the brim with love. It can be easy to spiral when you have to cancel plans and it’s only natural to be disappointed. However, I try to find a few things to be grateful for in each day no matter how tough they are. In doing so it bathes the day in a more positive glow The art of seizing tomorrow lies in listening to your body. This is a skill and in the early days I found a symptom diary helped me learn my triggers. I also find studying my calendar for the week ahead helps me keep things in check. I often open it on a Monday and start crossing out things I know will tip me over - and the people who matter always understand. So if there’s one piece of advice I can offer anyone with MS it’s that - learn the art of listening to your body. For me, my wheelchair has become my safety net because no matter how bad I feel, I always know that I can say “Tomorrow I will”, and that’s a beautiful thing.
Join our MS Squad for the Vhi Women's Mini Marathon on June 2nd and help us raise essential funds for our support services across Ireland. Sign up early to make sure you’re in!
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