This summer was a season of great change for our family. After little more than a year in our flat, my dad had found us a lovely big house with a garden and we were packing again. Moving house can be quite stressful for the healthiest of people, so it can really be a nightmare for somebody with a severe chronic illness like ME.
We actually loved our flat, it was enough for my sister and I, it ticked most of the boxes when we were house hunting a year ago, but there wasn't room for the parents when they came over, and it was starting to get crowded.
Moving From London
When we moved from London in 2017, we were coming from a tiny little studio flat in a shared house. It was basically a standard sized bedroom with a kitchenette in one corner, a tiny shower room in a closet under the stairs, and bunk beds against one wall to allow for more space to move around.
I had lived there for three years and it was okay for one person, but when I fell ill, my sister moved in with me to be my carer, and the place had become overcrowded and uncomfortable. It was really not suitable for two.
Our next flat was in a beautiful town far away from London. The flat seemed to be perfect for us. It was in a quieter neighbourhood, had 2 bedrooms, a lovely big bathroom with a tub and shower, a separate kitchen and a living room that was bigger than our whole London flat! It even had a ramp out the back so I could be wheeled in and out on the wheelchair. Perfect!
*Photos below were taken before we moved in
Too Many People In Such A Small Flat
Although my bedroom was tiny, I was happy with it, everything fitted in snugly and I could reach things without much exertion, everything was just the right size and distance apart for me, but after a year of living there, that flat also became too small for our family.
Our parents come over every week for two days, so initially we had them sleeping on the floor in the living room and then later those old bunk beds from the London flat were erected in the living room permanently to make life easier. Not ideal.
A Bigger House Was Needed
So the parents found us a new place in the same town and we moved at the end of July. This new place has three bedrooms, a large living room, a huge kitchen and an enormous bathroom too. It also has a private, enclosed garden which I absolutely love!
My bedroom is so big now, there is space to store my wheelchair and manouvre my walker. I have 2 desks and little side tables as well as 2 wardrobes. And there is still space for seating for my visitors to come sit with me. And we thought the previous neighbourhood was quiet - this one is even more so. It's wonderful!
*Photos below were taken before we moved in
Packing Up The Old House
I had just come out of a 2-month long severe flare and we had relatives staying with us at the time, so we were very careful not to overexert again. My family made sure to do all the packing and cleaning for me.
I'd be moved into a different room and they would pack all my things away. Then I'd move to a different room again, so I'd be far from the next action zone as they packed and cleaned the house.
I kept my noise cancelling headphones on and kept myself distracted as much as possible during the whole process. Once most of our things were delivered to the new house, and there was just the last bit of deep cleaning to be done, I was transported to the new place and left to rest there, in a room that was already set up, while they finished off the old flat.
Settling In At The New House
The unpacking worked in much the same way. Whenever there was too much commotion and noise going on in a room, I'd go park in a far away room for the day, all the doors would be shut between me and the chaos and I'd put on noise cancelling headphones.
Sometimes Mum would open a box and bring it to me, she would start unpacking it and I would decide where to put things or whether to get rid of them. It was an easy way for me to be involved without having to lift anything or move from my resting spot.
Decorating Our New Home
Coming from a furnished flat to a much larger, unfurnished house meant having to purchase new furniture for almost every room over the next couple of months. So whenever they went shopping for curtains or furnishings, they would send me photos on WhatsApp so I could help choose things for the house too.
I really am so grateful to have such great support from my family because it means that I was able to go through the whole process with minimal payback, but still feel like I was a part of the process.
The Effects Moving Had On My Health
Initially I was doing much better after the move. I am always surprised at how a change in scenery can improve not only my emotional well being, but even my physical condition.
The improvement isn't usually extremely noticeable, but being able to walk through a larger house and sit in a different room daily and even go out into the garden once a week was a huge deal for me. Even if it meant lying down the rest of the time.
The change that made the most impact, though, was that this house is much bigger which means that I now have to walk further to the bathroom and back, multiple times a day. More walking and more sitting upright at the kitchen table watching the birds, meant more exertion which accumulated over time and it started to manifest in an increase in symptoms.
But I don't think that this current deterioration is only due to the house move. Life happened - as it does.
At the time of the move we also had my cousin living with us. And, just like when our parents are staying with us, having more people in the house, as quiet and considerate as they might be, does impact my health. ME just reacts to the smallest triggers, there's no way around that.
Then, at the end of the month, I had my work capability reassessment which meant a trip by car to a town over an hour away and back again so that somebody could decide if I am still sick enough to be receiving financial aid from the government or if I am fit enough to work. (I wish I was!)
These assessments alone are very stressful, the idea that you have to prove how ill you are or lose the money you depend on is scary. Add to that a car journey and having just moved house - a flare was bound to come soon after, and it did.
I have spent the months since almost completely bedridden as my body recovers from the exertion and stress of this past summer.
The Joys Of A House With A Garden
Although I am still unable to go out into the garden regularly, I can see it from various windows around the house. The living room alone has 2 huge windows which look out onto different areas, each now adorned with bird feeders and very different plants. The kitchen too has an entire glass wall from which we can observe our feathered friends. That's what inspired my Breakfast With Birds series.
It is so tranquil here that I can hear the birds' sweet song from anywhere in the house, even if I'm too ill to get to the living room to see them. From my bedroom I have a view of the sky and the tops of some trees which I've very pleasantly discovered turn bright shades of yellow and red in the autumn before losing all their leaves. I can now see the little birds hopping around on their bare branches.
In the evening the sunset is visible from my bed. A big upgrade from the tall evergreen hedge outside my old room at the other flat. The hedge grew so tall that it blocked out the sky!
12 Tips For Moving With Chronic Illness
- Don't be shy to ask for help, delegate as much as possible.
- Set up mail redirection before your move so that you have time to get in touch with everybody over the next few months to change your address.
- Don't be tempted to pack and clean, let others help you, remember, your health, your very survival, might depend on what you do during this stressful time
- Make sure to get a suitcase packed with a week's worth of clothing and essentials in case something goes wrong and you can't get your things unpacked right away. Think holiday or camping in the new house.
- Have one kitchen / household box packed with essential items and groceries which can be unpacked in the new house first - things you can get on with while you slowly unpack the rest of your boxes. Things like a kettle, toaster, knives, forks, teaspoons, a set of plates, bowls and mugs, your favourite frying pan and pot, a few of your most frequently used cooking utensils, etc
- It is helpful if the two tenancies overlap slightly, or if you can get the keys to the new house early, so your helpers can get things organised on both ends to speed the whole process up and make the most of their time with you.
- Have your people clean the new house and air the rooms for you before moving things in. If painting needs to be done, this will be a very important step in order to get rid of paint fumes.
- Setting up a doorbell or intercom system is very helpful too. If you are often bedridden, this will allow you to communicate with and allow access to people at the gate or door without having to get up. This is most helpful for mail deliveries, because missing them when you cannot get to a depot is frustrating. Nobody wants to miss their happy mail!
- Have your new bedroom, bathroom and kitchen set up with the basic essentials first, before you arrive at the new place, so you have a place to rest and start recovery while your friends finish the move and do the big clean up of the old place.
- Designate somebody to provide meals and refreshments for you and your helpers throughout the process and even stock your freezer with some cooked meals for your recovery period after moving in.
- Have friends or family help you change your address with your doctor, your bank, and any other service providers and make calls to transfer your utility accounts to your name.*
- Get somebody to help you create a list of contact details for local services that might be useful. This should include your new landlord or property manager's number in case something stops working in the new house. Also local take-away, pharmacy, taxi service, bus and train timetables, etc.
*If they cannot make the calls for you due to security issues, it is still helpful for them to sit next to you while you call so they can help you make decisions and remember information and questions you need to ask as well as taking notes and writing down reminders for you.
My sister does this with me and the help desk operators are usually quite accommodating if she needs to take over from me as they know she is with me on the call from the start and know that I am still present even if unable to continue on the call.
Overall, I think this move went pretty well.
I did have to spend a few months in bed again, but like I said, life happened and sometimes we just have to roll with it - eventually we start making progress again and things start looking up.
I have finally started feeling a bit better again after 4 months in bed, and have been able to do some art at my desk again!
I look forward to continued progress, but with the holidays coming up, I am also being realistic - it is very possible that I will have another extended flare before the winter is done, but I will enjoy every moment that I can in the meantime!
What About You?
- Have you ever moved while severely ill?
- Did you find friends or family were willing to help you out?
- What tips could you provide to somebody who is facing a house move?
- How long did it take you to recover from the move?
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I have had severe ME/CFS for 22 years. I am bedridden except for being able to make it to the bathroom 4 feet from my bed. My husband retires this month and we bought a home in another State. My husband felt we needed to be closer to our children as he is 70, but I am only 56. I can’t help in the packing, sorting, unpacking, getting new draperies, etc; and the idea of moving 36 years of marriage to another State is causing great anxiety and panic attacks.
Although all my 5 kids are adults, they have families of their own. They have never been able to accept my illness (moms always get better) and they don’t understand that a 70 year old care giver must have help for this monumental task.
How can we let them understand that we MUST have their help? We don’t have the money to hire it out. I know they are busy and have lives of their own-but all 5 families live within 3 hours of us.
Oh Katharine, I am so sorry that you are struggling so much with family that don’t understand. You absolutely will need help and your husband does too. Caring for somebody who is so severely ill is not easy and takes its toll.
My sister is my carer and our parents come over every week or two to take over and give her a break. And she’s in her early thirties.
I would suggest sending your children some official information on the latest scientific findings on ME. I will gather a few links and send them to you via email. I think a separate blog post is in order too. So they will be easily found by other readers in the future too.
It is so hard when we are so horribly misunderstood. I hope that by reading the science they will be more considerate and helpful. If all else fails, I think it might be worth reaching out to local churches and charities to see if they have any help available.
Moving house is a big job. Your new home looks beautiful. I wish all the best and many happy days there! ?
Thank you, Gloria!
Your new home looks lovely…The hints and tips about moving cover every eventuality I am sure it will be most helpful to anyone with a chronic illness. I read the comment from Katherine and it made me sad…Since I have been blogging I have read many posts by bloggers who are chronically ill..I make no excuses I understand more now about chronic illnesses and the daily struggles some have…I think there is that barrier that if you haven’t experienced the reality of day to day living it is hard to comprend… people relate to a broken leg for example but something they cannot see it seems they have trouble with..does that make sense…I think bloggers like yourself work hard to relay this and do a great job by raising awareness 🙂 x
Thank you so much for your kind words of encouragement, Carol. It means a lot to know that what we are doing is helping to bring awareness and letting people understand our situation a bit better. I never understood it myself until I fell ill – I could never have imagined the levels of pain and exhaustion that one can feel while looking completely healthy and living a healthy lifestyle… it’s quite unfathomable. But that is why I keep writing – I hope that others will listen to their bodies and not ignore all the signs like I did – remaining ignorant to the possible causes of my symptoms and as a result following the wrong advice from ill-informed doctors and making myself severely ill. I found out later that other people I know had had this illness for years, but never spoke out about it – I decided I would not do that if speaking out could open people’s eyes and maybe help somebody else understand their condition and make informed decisions about how to manage it. Thanks again – for reading and for the encouragement. xx
Love your post. It’s exactly what I needed to read before a big move across the country. Thank you for being so brave and for your awesome blog!!! Love the garden by the way. Gorgeous!
Hi Jessi, Thank you so much. I am glad that my tips are helpful to you. Moving is exciting, but such hard work. I hope you have an army of fantastic people to help you make this move as painfree as possible. Hugs