Going Out
"People aren't sure what you can and can't do anymore so they just don't invite you out. If they would let me explain, they'd understand that I can still do everything I used to, I just get tired more easily."
Everyone's used the excuse of being "completely knackered" to get out of doing something, but its not until you have MS that you actually realise how debilitating fatigue can be. It's not just feeling tired that can stop you enjoying all the activities you used to, such as Saturday shopping, nights on the town and cinema trips.
Many people with MS complain that their social life suffers after being diagnosed, a combination of friends and family not comprehending your needs and you having to adjust to your symptoms. You feel the same inside, you still want to go out and party the night away, or go shopping with friends on a Saturday now and then, and you can with careful planning and listening to your body's signals.
Tips for planning trips out
"I'm grateful to the friends who still invite me out, those who don't decide for me that a concert or going to the pub might be 'difficult'. Invite me and let me decide."
Going out with MS is not just about getting there. It's about making sure you have the best time once you're out. Dancing, drinking, chatting to friends, are things we take for granted. It's hard to turn down a spin around the dance floor, the offer of a drink, or cope with asking a new partner to help you to the toilets for the first time. Above all if you can approach more challenging things with confidence and humour then other people will take their lead from you. Changes to your ability to concentrate, for example can also cause you problems when you are out and about. People with these symptoms find that writing themselves lists with all the information about the trip can really help when they are feeling more muddled.
Try and plan in advance. Although MS is unpredictable, careful organisation can make going out easier and more manageable.
- Contact the proposed venue and find out if it will be suitable.
- Are there provisions for people with impaired mobility, lifts, ramps?
- Are the toilets accessible without having to traipse up flights of stairs?
- If you have memory problems, make a detailed list about where the venue is, how to get there etc to make sure you have all the info that you need to hand.
- If you have to buy a ticket, do they offer you any discounts or free entry for carers?
- If you are planning to arrive by car, is there parking nearby?
Above all, listen to your body. Although you might want to try and carry on as normal a social life as possible, you may have to make provisions and compromises. Don't push yourself as this could result in an increased risk of relapse.
Sporting events
Most major sporting venues have excellent provisions for differently abled supporters. Premiership and league football teams often have disabled supporters clubs and specific areas in their stands dedicated to people who find standing for long period of time difficult. Be advised that most need considerable advance warning, sometimes as much as a month before the date of the match you want to go to, as spaces are limited and existing season ticket holders get priority. Carers can also often get free tickets for matches. Further information is available on specific team websites.
Theatre and Cinema
Newer venues such as the Royal Shakespeare Theatre in Stratford-Upon-Avon, tend to have good access for wheelchair users and people with limited mobility. Some older venues are restricted because of their status as listed buildings. But it's not just about the number of stairs that you have to climb to get to the toilets, toilet facilities are often inadequate and there are long queues which can be very difficult for people with bladder problems. Also consider where your seat is located, do you need more leg room, access to the toilets during the performance?
If you have specific issues contact the venue directly before booking your ticket. If you are diverted to a ticket agency, ask to be put through directly to the theatre box office. Some theatres offer reduced prices for people with disabilities.
More information on London theatre accessibility can be obtained on from The Society of London Theatres.
Cinemas
Modern cinemas have excellent facilities for people with mobility issues such as providing wheelchair spaces, removable seats, ramps or lifts. Toilet facilities are always much better in cinemas than theatres and seats are often larger with more legroom. However, access to older cinemas may be hampered by their status as listed buildings. Check the cinema website or call the venue directly to make sure they can accommodate your needs.
Restaurants and Bars
Most bars and restaurants have good facilities and cater for people with specific needs, including lifts, accessible toilets and ramps. Again contact the venue directly and quiz them about their facilities before you book.
Drinking is sometimes a big part of a night out with friends. Although there's no real evidence that alcohol makes MS worse, some people with MS have found that neurological symptoms, especially imbalance and lack of coordination, can get worse after just one drink. Talk to your doctor if you have questions about how drinking could affect your MS.