Coping with being Housebound - Guest Post

Sarah has mainly written this post, although I have added some of my own tips and advice at various points.

I am doing a guest post for the lovely Jenny, to raise awareness about the life destroying, awful, horrid, serious illness, M.E.

Now, before I begin with the topic I have chosen for awareness, I shall start by introducing myself, and telling you my own personal experiences of M.E. I first began noticing disturbing, worrying symptoms late 2008, a few days before Christmas, if I remember rightly. I am now 21. So, it’s been going on 6 years this December. Symptoms like exhaustion, feeling very drained, unrefreshing sleep, racing heart/palpitations, pain, nausea, general feeling of being unwell/something not right at all, and many more. That's the thing with M.E, it is so unpredictable, and the symptoms are ever changing for many people.

There are over 60 symptoms documented for M.E; for some, it affects them mildly, severely, moderately; However, even mildly affected, it can alter your life. 3 days after my symptoms began, I was hospitalised for 3 days due to my heart irregularities and the other symptoms I was suffering from. Of course, they did tests but the conclusion was nothing was found to be wrong.

With M.E, there is no test, no way to find out if you have it, yet. My symptoms began to multiply, dozens of new symptoms, all of different degrees, different types, and it scared me, heck, it frightened me to death because I had no way to make them disappear. I won't list them all, there are far too many, but to show you how scary, unpredictable and frightening it is,

I will explain some of the different areas it can affect:

·      Cardiac symptoms

·      Cognitive and Neurological dysfunctions

·      Digestive dysfunctions

·      Headaches

·      Immune system dysfunctions

·      Joint and muscle problems

·      Widespread pain

·      Seizures

·      Sleep problems

·      Weight changes

·      Difficulty regulating temperature

·      Fatalities (Yes, it has been known to cause death in serious cases)

I have been both bedbound and housebound, however, I am lucky in the sense I have my rare good days where I am able to go outside for a short period of time, or to spend time with my family, like my nephew and niece, but not without consequences. I take the bad with the good, because the good is worth it. This is my life, all wrapped up in three different parts; Good days, Bad days, Very bad days.

Everyday, I have my daily meds - 33+ pills, and I say + as there are others too but they’re not as important. On bad days, it's more. I can swallow at least 10 in a few gulps whereas before could hardly swallow 2 – I guess that's a plus! I always try to find a positive; it keeps me going to try and focus on even the smallest positive.

A small selection of medications someone with an invisible illness can take

With M.E, you don't LOOK as ill as you actually are. It is an invisible illness. The differences can be surprising. For example, this is me all "dolled up" and then me without the make-up:

A bit of make-up and doing my hair, and I actually look pretty well

People don't often see me when I've got no make-up on and have been stuck in my pyjamas for days at a time

A lot of us try and appear ‘well’ because of the judgment we get with this illness. We are not faking this, we are not attention seeking, it is not in our heads, it is not psychological. Just because it's invisible, doesn't mean it does not exist.

When housebound, you can find it extremely difficult because:

1) Others can enjoy their lives, and you cannot do what they can.

2) Every single day is the same, making you feel that repetitive boredom and even more upset that you cannot do anything else.

3) You want to be able to live your life the way you used to, or want to, and you can't.

These 3 factors and many more make being housebound a very hard thing to come to terms with. Depression is a possibility because you begin to feel down, low, depressed, because of your illness, because you cannot do the above things and many more, which can become a very big issue, as it has with myself and many others. However, M.E is NOT PSYCHOLOGICAL. I say this because people may take the above the wrong way - I said Depression can be CAUSED by M.E, not the other way around, so please note that. There is no cure for M.E, and that's a major part of awareness: raising money to help fund research, and eventually, find a cure for this.

The following information is to help those who are housebound, which I think is important because some people forget that a lot of those with M.E are house, or worse, bed bound.

Coping with Being Housebound

Being housebound is something that affects many people, for a variety of different reasons. It may be for a short period, or can last for years. No matter how long it goes on for, it is an extremely difficult thing to cope with.

There are times when the walls feel like they are closing in and it’s hard to know what to do if you physically can’t go out, no matter how much you may want to. I believe that just because you are stuck at home doesn’t mean you have to feel bored and alone. These are some tips that I’ve picked up during my years of being housebound.

Bring the outside in:

It’s really easy to lose track of the world around you when you’re stuck inside, especially if you’re unable to go out into the garden or even have the curtains open. You can lose all sense of the time of year and the seasons. It’s lovely when carers, family or friends bring things in from outside for you to see, touch and smell. You can take in anything from the garden, park or beach.

For example flowers, leaves, stones, even snow or icicles in the winter and sand or shells in the summer. For celebrations like Bonfire Night and New Year’s Eve, you can even get indoor fireworks and sparklers, and it can be great fun toasting marshmallows over a candle.

Access the right care and treatment:

When you’re housebound it can be very difficult to access medical and health services that you so desperately need. But it’s important to be aware of the help that is out there for housebound patients. GP’s can do home visits; although it can be difficult to get them to agree to these, as they have so many patients that they often struggle to find time to make a home visit. Nevertheless, it is a service that should be provided if you genuinely cannot leave the house.

There are also dentists and opticians that will come to your home, rather than you having to go to them. The best option is to do a quick Google search to find out what is available in your area, or ask around if you know of other local housebound people. Your GP surgery may also be able to provide advice, as they are likely to have a fair few housebound patients on their books.

It is also worth asking for a referral to an Occupational Therapist (your GP can organise this) as they deal with housebound people on a daily basis, so can advise you on the help and support available. They can recommend aids such as stair lifts, ramps, wheelchairs and bath boards, which can help make life a little bit easier.

If you struggle with things like personal care and daily tasks like cleaning, food preparation and shopping, there are also plenty of care agencies that provide carers to come to your home and help you with everyday tasks. It is worth getting a financial assessment with Social Services, to see how much you would need to pay towards your care, but it can be a great help, especially if you are currently relying on family and friends.

Break the monotony:

It’s really easy to get stuck in a rut, to do the same things at the same time, every single day. The days end up blurring together and the boredom is awful. Find things that you enjoy doing; they may not be the same things you did before, but you can often adapt what you were doing or find completely new interests. Some ideas of things to do are:

·      Card making or crafts - go online for tutorials, or look for craft kits that provide all the materials.

·      Jigsaws – get a jigsaw board that you can fold up and put away if space is an issue.

·      Photography – you don’t have to go outside to find unusual or interesting scenes, look for unusual objects or try different angles. Pets and people can provide great inspiration.

·      Art, painting, drawing – a sketchbook can be fun to fill with doodles or works of art. Try experimenting with different mediums like pencils, pastels or even felt pens.

·      Computer games – there are lots of free games online, as well as ones to download to phones or tablets.

·      Reading – download e-books onto an e-reader or go old school with an actual book! Often libraries will deliver books to house bound residents and they normally don’t have late return fees. You can also appoint somebody to take books out from the library for you, for example a carer or friend. If you struggle to read, audio books are also a great option to look into. Calibre are a charity for people who find reading difficult for a variety of reasons, and provide audio books so people can still access the joy of reading.

·      Distance Learning – there are lots of courses online, with flexible hours and they can be done as and when you feel like it. Look into places like The Open University for more information, as they often do free short courses so you can give it a try and see how you manage

·      Look into charities that you can identify with, for example AYME or Beat as they often have membership packages that include magazines and access to message boards. There is also an organisation called Pillow Fort who publish a bi-monthly magazine for people with chronic illnesses

Alternate what you do, change up your routine and keep your eye out for new things.

Find ways to connect with people:

You may not be able to go out and you might not even be able to have visitors, but there are ways to have contact with people, so that you don’t feel completely alone. If you are well enough for visitors, there are several organisations that organise for volunteers to visit people who are home bound. These are a great way to meet new people and to break up the day with someone to talk to. Most volunteers, often called befrienders, visit for about an hour. The organisations aim to match people with similar interests; but you might also meet people you would never normally talk to and you’ll hear about all sorts of things. If you find you aren’t getting on as well as you hoped with the volunteer you can request somebody else.

If you’re feeling down and desperately need someone to talk to, then there are phone lines you can call to talk to somebody if you need a listening ear.

Try the Samaritans or this link if you’re in the USA.

With the invention of social media there are always lots of people online, no matter what time of the day or night. Sites like Facebook, Twitter and other support forums have groups you can join and talk to others with similar hobbies, interests or experiences. They can be a great way to get support when you are living with a specific condition. You can meet some lovely people, from all around the world, but it’s best to be careful with how much information you give away online. Never give out your address, telephone number or bank details. Skype is also brilliant for keeping in touch with friends and family from around the world, and can be done from the comfort of your sofa or bed using a tablet or laptop.

When making friends online, after a while you might feel comfortable to share more information, such as your address with them. Obviously you need to be careful with this, but I have made some great friends who I now write to on a regular basis. Having pen pals can really brighten your day when you’re housebound, so it’s something I would definitely recommend looking into. You can even go on Instagram and search with the hashtag #penpalswanted to find potential pen friends!

The world at your fingertips:

Just because you’re stuck at home doesn’t mean that you can’t see the world.

There are many websites now, which mean that you can enjoy far off places in real time, without ever leaving home. Try Camscape to see everything from penguins in Antarctica, to the Sydney Opera House, Time Square in New York and The Colosseum in Rome. You can even head into Outer Space with NASA’s webcam. Take time to explore some incredible places.

You can even enjoy a holiday from home by trying some recipes from the country you’re visiting, putting pictures up around your room and even learning some of the language. It’s really fun, especially when other people are going on holiday and you feel left out. Visit Holidays from Home for more tips, as well as ready-made holiday packages.

Keep online shopping in mind – you can buy practically anything online these days. Whether you need some new clothes, toiletries, food or entertainment, there really is a website for everything. If you’re not sure where to look, ask around on Facebook for recommendations.

It can be difficult to feed yourself well when you’re unable to get out to the supermarket, but that doesn’t have to be the case any more. Most of the big supermarkets now do online ordering, and to make it easier I know that Tesco remembers your shopping list for next time, so you don’t have to go through everything again. If you find it difficult to prepare your own meals, there are also companies who deliver delicious ready meals to your front door (and will even pack them into your freezer for you!) A few companies I’ve heard good things about include Wiltshire Farm Foods, Cook Food and Look What We Found. A lot of people also suffer with intolerances and allergies to things like gluten, dairy and chemicals used to preserve foods. But there are now plenty of companies who cater for these needs, including Ilumi World who provide ready meals that are gluten and dairy free, Abel and Cole who sell and deliver organic produce and Ocado who I’ve heard are great for gluten free foods and also colour code your shopping depending on whether it needs to go in the fridge, freezer or cupboard – great for when you have limited energy!

Celebrate events:

It can be really easy to feel completely left out when the world is celebrating events like New Year’s Eve, Valentine’s Day and other popular holidays. There’s often a big build up to it, when, despite not going out, you can’t really avoid, because it’s constantly on television, radio, online and in magazines and papers. People keep talking about all they are planning and the majority of the time this involves going out or having people over. It can also be a reminder of how different your life is to everyone else’s, which makes it harder to cope with the struggles of every day. It’s a valid choice not to acknowledge the event, but if you want to do something special, it is possible to create your own party at home. You don’t have to have people over; you can enjoy it on your own, or with online friends, as part of a web community.

To create your own party at home you can:

·      Order special, ready prepared party food from the supermarket, with online shopping.

·      Have a go at making some traditional recipes

·      Decorate your room with pictures, balloons, streamers

·      Check out online party shops for cool themed decorations

·      Adapt some of your activities during the days and weeks leading up to it to link in with the party, for example using craft time to create decorations or themed cards

·      Put together a playlist of suitable music you can listen to or look for any DVDs which are related to the party/event

Being housebound is a real challenge, it makes you adapt your life in ways you never imagined, but just because you’re at home, doesn’t mean you can’t still have fun and enjoy life; you just have to be a little creative.

Do you have any experience of being housebound? Have you found this post helpful or do you have any advice for coping with being housebound?

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