Mobility Aids For MECFS : If you think you need one, you do.
Mobility Aid Mythbusting
Myth: If you can walk you do not need a wheelchair.
Fact: Around 1 in 3 wheelchair users are able to walk.* Fatigue, pain, orthostatic intolerance, and difficulty walking long distances are all good reasons for pwME to use wheelchairs. The only reason you need to justify using a wheelchair is improved quality of life.
Myth: Using a mobility aid will decrease your independence.
Fact: Using a mobility aid can decrease your energy expenditure on getting around which will increase your functional capacity and independence. Fatigue in ME is not caused by deconditioning and using mobility aids will allow you to be more active not less.
Myth: You should only use a single mobility aid.
Fact: MECFS is a fluctuating disability and your need for assistance will vary from day to day. If economically feasible, owning multiple mobility aids is ideal to allow you to use more assistance on days you need it.
*https://www.thisismeagency.co.uk/ambulatory-wheelchair-users/
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What Are Mobility Aids
Some common mobility aids used by pwME include:
Tilt-in-space power wheelchairs
Lightweight power wheelchairs
Mobility scooters
Manual wheelchairs
Manual wheelchair walker combos
Walkers
Cane stools
Canes
Additionally, common aids used within the house include:
Shower chairs
Tilt-in-space commodes
Commodes
Bath lifts
Bedpans
Finally, while not officially mobility aids:
Rolling stools
Kitchen stools
Day beds
Overbed tables
All allow for less strenuous methods of completing daily tasks.
The goal of all functioning and mobility aids is to allow disabled people to more efficiently move or complete tasks. An occupational therapist can help you to discover the multitude of aids available!
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Who Should Use Mobility Aids?
Anyone who can benefit from mobility aids should use them!
There is a false belief among many doctors and healthy people that using mobility aids is "giving up." This could not be more wrong. Not doing something because you don't want to use a mobility aid is giving up. Using the mobility aid is refusing to give up. It's being adaptive and resilient.
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Mobility Aids And Physical Functioning
While it is true that in some diseases it is important to use muscles as much as possible to maintain function, this is not the case in MECFS. Deterioration in ME is primarily caused by PEM not deconditioning. Therefore, the benefit of lessened risk of PEM strongly outweighs the risk of deconditioning in ME patients when it comes to using mobility aids. Cases of severe comorbidity may be more complex.
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What mobility aid should I use?
In general, you want to use the mobility aid that maximizes your quality of life and ability to function. This is a balance:
Higher support mobility aids like mobility scooters and electric wheelchairs will allow you to do more but take up more space and not be as easily accommodated.
Lower support mobility aids like canes, foldable chairs, and walkers are easy to bring with you anywhere but provide less support.
For mild to moderate patients owning both more and less supportive aids is generally ideal in order to be able to access inaccessible spaces. For severe patients, it may make sense to only own more supportive aids.
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Use Mobility Aids More Aggressively
I highly encourage pwME who are trying to decide between two levels of mobility aid and cannot afford both to choose the higher support option.
For example: if you are choosing between a walker and wheelchair it is better to choose the wheelchair.
If you choose the walker than you are likely to push yourself on the days when a wheelchair would have really been better.
If you choose the wheelchair than you are likely to use it even in situations where you could manage without, bettering your pacing and allowing you more rest.
I almost never meet people with MECFS who are doing less than they should be. We are so limited that by necessity we constantly overexert, not under. Thus opting for a higher support mobility aid will generally only have positive side effects of additional rest or freeing up spoons for other functions.
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Get Mobility Aids Early
Do not wait until you absolutely need a mobility aid to purchase one. This can cause you to push yourself beyond your limits in the time it takes to get the mobility aid. I see far too many sad stories of pwME who get mobility aids only after they become too severe to really take advantage of them. I have never met someone who wishes they waited longer to get a mobility aid.
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Mobility Aids & Illness Visibility
Many people with ME are used to their illness being invisible. When they use a mobility aid this changes. Their illness becomes visible. Using a mobility aid does not make you more disabled, in fact, it makes you more able. However, the visibility of our disability can be both affirming and lead to feelings of imposter syndrome.
Remember around 1 in 3 wheelchair users can walk some distance.* You do not need to be "disabled enough" to use a mobility aid. The only reason you need to use an aid is that it helps you function.
In regards to "using up" disabled resources, you should not feel guilty for using a resource you need to interact with the world. Remember that there is artificial scarcity of these resources. I encourage all disabled people that rather than fighting over who should be allocated scarce resources we should be fighting to have adequate resources supplied so that we do not have to fight over them.
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Justifying Mobility Aids In Public
Having a more visible disability means that you will be faced with invasive personal questions about your health. You are not obligated to answer any of these questions.
@Healthy people: Someone's mobility aid is not an open invitation to their medical history!
However, while not obligated, it helps to be prepared. Here are some options. I encourage you to stick to the earlier options as you build your self-confidence in being visibly disabled. When you feel more confident and/or encounter genuinely interested people these encounters can then be used to educate and advocate.
Defensive
That is none of your business.
Private & Polite
I have an invisible illness.
Targeted Details
I have a neurological disease.
Opportunity To Educate
I have a neuroimmunological disease called myalgic encephalomyelitis or ME. It causes me severe fatigue, muscle weakness, pain, and cognitive dysfunction* and without my wheelchair* I would be unable to leave the house. The main difficulty of ME is something called post-exertional malaise which means the more energy I expend now the worse symptoms I will have for days to come. So while I might look okay now, this outing will likely cause me to be bedbound* for the next week.*
*customize as necessary for your level of severity and symptom profile*
Bonus: Opportunity for Advocacy
Thank you so much for your interest, myalgic encephalomyelitis was poorly named chronic fatigue syndrome in the 80s and is now often referred to as MECFS. It is often triggered by viruses and covid-19 has triggered millions of cases. We are called the millions missing because 3 in 4 are unable to work and 1 in 4 are completely housebound or bedbound. There are no FDA-approved treatments and research is extremely underfunded.
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Mobility Aids are one of the most helpful tools for pacing and management of Myalgic Encephelomyelitis aka MECFS. In short, if you think you might need one, you probably do!
There is a strong misconception that in order to "need" a mobility aid your disability must completely stop you from doing an activity without it. But in reality, mobility aids are used all the time by disabled people in order to improve our quality of life regardless of whether we are completely unable to function without them.
This is because just because you _can_ do something doesn't make it safe or healthy to do so.
Someone with POTS often can stand for a decently long period of time. But doing so risks fainting and hitting their head! So using an aid and sitting down is the smart and rational thing to do.
For pwME using mobility aids for pacing is essential to not becoming more disabled.
If a mobility aid allows you to do something without crashing you NEED that mobility aid in the same way a cancer patient needs their chemotherapy drugs to prevent their tumor from growing. Post Exertional Malaise PEM aka Post Exertional Neuroimmune Exhaustion or PENE is how MECFS progresses. Repeated crashes cause the disease to get worse over time and can lead to severe ME and some of the worst quality of life on the planet.
Multiple studies have shown that Fatigue POTS / OI and Muscle Weakness in MECFS are primarily not due to deconditioning but the disease itself. So using mobility aids will not decrease your abilities it will increase them by allowing you to avoid PEM and more effectively manage your disease.
As for healthy people, remember that our disability does not have a look. We are just as disabled regardless of what aids we choose to use on a given day. Mobility aids are not an excuse to ask for someone's private medical info and its not a miracle when someone in a wheelchair stands up!
A note on wheelchair user vs wheelchair-bound... most people who need wheelchairs prefer the term wheelchair user because using a wheelchair allows them to do far more than they would be able to do without the wheelchair. However, I have also found the term wheelchair bound to be useful when describing the progression of my disease and use it to differentiate between when I have been a wheelchair user (someone who could walk a little but had greatly expanded freedom thanks to my wheelchair) and wheelchair-bound (at which point I was mostly bedbound and dependent on a wheelchair to be moved at all) In this case I am using wheelchair-bound to represent the loss of my ability to walk, which since I used a wheelchair as an ambulatory wheelchair user prior to this is a helpful contrast. If I were able to use a wheelchair again in the future after being bedbound and unable to use my wheelchair currently I might use the term wheelchair user again to emphasize the freedom the chair would allow me. In short, use of these two terms emphasizes different things and so while most people with wheelchairs prefer wheelchair user I do believe both terms have a place and it's up to the disabled person to choose the most appropriate term for what they want to convey.
