Why Am I Using a Wheelchair When I Can Walk?

Why Am I Using a Wheelchair When I Can Walk?

crackednailsandsplitends.co.uk

I can stand. I can take steps. I can walk from one room to another. On a good day, I might even be able to walk further than someone looking at me would expect.

But being able to walk does not mean that walking is always possible for me.

It does not mean that walking is painless.

It does not mean that I can stand in a queue for twenty minutes.

It does not mean that I can walk around a shop, wait for an appointment, visit somewhere with my family and then carry on with the rest of my day as though nothing has happened.

This is something I have had to learn about myself since living with ME CFS, spinal stenosis and fibromyalgia.

I can walk, but walking can come at a huge cost.

Walking does not always mean walking well

I think this is one of the hardest things to explain about invisible disability.

People see me walking and understandably assume that I am okay to walk.

I understand why they might think that.

If I am walking into a shop, I look like someone who can walk into a shop.

If I am walking alongside my family, I look like someone who can walk alongside their family.

If I stand up from a chair and walk across a room, it is very easy to assume that I have no real difficulty with mobility.

What they cannot see is everything happening inside my body while I am doing it.

For me, walking can mean pain building with every step.

It can mean my legs feeling increasingly heavy.

It can mean my energy disappearing much faster than it should.

It can mean becoming unsteady and worrying that I am going to fall.

It can mean desperately looking for somewhere to sit down.

It can mean trying to calculate how much further I have to go and whether my body is going to manage it.

That last part is exhausting in itself.

I am not simply thinking about where I am going.

I am thinking about whether I can physically get there.

Standing still can be just as difficult

One of the things I have found particularly difficult to explain is that sometimes standing still can hurt more than walking.

There are situations where I might technically be able to walk, but standing in one place becomes incredibly painful.

Queues are a perfect example.

A queue might seem like a very ordinary part of everyday life.

For me, it can become something I dread.

I cannot simply stand there and wait without thinking about what is happening to my body.

The longer I stand, the more the pain can build.

My anxiety starts increasing because I do not know how long I am going to be standing there.

I start wondering whether I am going to make it to the front.

I start worrying about what happens if my body suddenly says enough.

I start looking around for somewhere to sit.

I start thinking about whether I am holding everyone else up.

That is not a particularly relaxing way to buy something, attend an appointment or get through an ordinary day.

Sometimes I can walk slowly for a short distance more easily than I can stand still for a prolonged period.

That is one of the reasons mobility is not as straightforward as people might imagine.

The pain changes everything

Fibromyalgia has changed my relationship with pain.

Pain is not something I only experience after doing something strenuous.

It can already be there before I have even started.

Then walking can add another layer.

There are times when the pain becomes so overwhelming that it starts to dominate everything else.

It becomes difficult to think about the conversation I am having because I am concentrating on putting one foot in front of the other.

It becomes difficult to enjoy being somewhere because I am thinking about where I can sit.

It becomes difficult to concentrate on my children because part of my brain is calculating how much longer I can keep going.

That is what people do not always see.

The wheelchair is not necessarily about whether I can physically move my legs.

For me, it is about what happens when I use them.

I cannot always walk far enough

There is a huge difference between being able to walk and being able to walk a meaningful distance.

I can walk a short distance.

That does not mean I can walk around a large shop.

It does not mean I can walk around a tourist attraction.

It does not mean I can walk from a car park across a large venue.

It does not mean I can spend an afternoon walking around with my family.

My walking distance is limited.

Often very limited.

I have to think about the distance between where I am and where I need to be.

I have to think about whether there will be somewhere to sit.

I have to think about how much energy I have that day.

I have to think about what I have already done.

With ME CFS, that becomes even more complicated because the consequences of doing too much are not necessarily immediate.

I can sometimes push myself through something because I desperately want to participate.

The problem is that my body will make me pay for it afterwards.

That is where post exertional malaise comes into the picture for me.

Something that looks like a short walk to somebody else can become much more than a short walk inside my body.

The wheelchair gives me another option

For a long time, I think I viewed mobility aids as something that belonged to people who could not walk at all.

I have had to change that way of thinking.

A wheelchair does not erase the fact that I can walk.

It gives me another option when walking is too painful, too exhausting or simply not realistic.

That distinction matters enormously to me.

I am not pretending I cannot walk.

I am acknowledging that I cannot always walk enough.

There are places I might otherwise avoid because I know the walking involved will be too much.

There are days when using a wheelchair means I can actually participate instead of staying at home.

There are occasions when it means I can spend time with my family without spending the entire time worrying about whether I will physically make it back.

For me, that can mean the difference between taking part and missing out.

I still feel guilty about using it

Knowing that a wheelchair helps me does not magically remove the guilt.

That part is much harder.

There is still a little voice in my head sometimes asking whether I really need it.

What if someone sees me walking later?

What if someone thinks I am pretending?

What if somebody thinks I am taking a wheelchair away from someone who needs it more?

What if I stand up and walk?

Does that mean I should not have used it?

These thoughts can be incredibly difficult.

I know logically that mobility aids do not have to be all or nothing.

I know that many disabled people have fluctuating mobility.

I know that someone can walk sometimes and need a wheelchair at other times.

Yet knowing something logically and feeling it emotionally are two very different things.

I worry about slowing everyone down

There is another part of this that I do not think people always understand.

I am conscious of how slowly I walk.

When my body is struggling, I can become painfully slow.

I worry that my husband and children are waiting for me.

I worry that friends are having to walk at my pace.

I worry that everyone else is ready to move on while I am still trying to get from A to B.

I worry about being late.

I worry about making people wait.

I worry that I am becoming a burden.

Sometimes those thoughts are almost as exhausting as the physical symptoms themselves.

Using a wheelchair can take some of that pressure away.

It means I do not have to constantly apologise for the speed at which my body is moving.

It means I can be part of the experience rather than feeling like the person everyone is waiting for.

That matters to me.

There is anxiety attached to walking too

My anxiety around mobility is not simply about pain.

It is also about uncertainty.

I do not always know exactly how my body is going to behave.

I can leave the house thinking I will manage something and then find that my pain or fatigue is much worse than expected.

I can become unsteady.

I can feel as though I am not properly secure on my feet.

Even with my walking stick helping to support me, I can still worry that I am going to fall.

That makes walking somewhere unfamiliar particularly difficult.

I am constantly aware of the ground beneath me, the distance I need to cover and what is around me.

That takes mental energy.

Sometimes I am not enjoying the place I have gone to because I am concentrating so hard on getting through it safely.

My walking stick helps, but it cannot do everything

My walking stick is another example of something that people can misunderstand.

It helps me.

It gives me additional support and confidence when I am walking.

But it does not magically remove the pain.

It does not give me unlimited energy.

It does not mean I can suddenly walk for miles.

Almost always I need my walking stick.

Almost always I need somewhere to sit.

Sometimes I need a wheelchair.

Sometimes I might walk a little and then use a wheelchair.

None of those things cancel each other out.

My needs can change depending on the day, the environment, the distance, the amount of standing involved and what my body has already been through.

I have had to stop thinking in terms of proving I am ill enough

This has probably been one of the biggest lessons for me.

I do not need to prove that I am ill enough to use a mobility aid.

I do not need to make myself suffer just so somebody else can understand that I am struggling.

If using a wheelchair allows me to conserve energy, reduce pain and participate in something that matters to me, then that is a valid reason for me to use one.

I have spent enough time questioning myself.

I have spent enough time wondering whether I should just push through.

I know where pushing through can lead me.

Living with ME CFS has taught me that my energy is not an unlimited resource. I have to make choices about where I spend it.

That is why pacing has become such an important part of my life. I have written more about my own experience in my post about practical pacing strategies for managing energy with ME CFS and fibromyalgia, because pacing for me is not about following a perfect routine. It is about constantly adapting to what my body can actually manage.

Using a wheelchair does not mean I have stopped trying

I think this is another misconception that can be incredibly damaging.

Using a wheelchair is not me giving up.

It is not laziness.

It is not me deciding that I cannot be bothered to walk.

It is me recognising my limitations and trying to work within them.

There are days when I can walk further.

There are days when I cannot.

There are days when pain is the biggest problem.

There are days when fatigue is worse.

There are days when both arrive together and I simply have very little left.

My body does not give me a neat timetable.

I cannot look at Monday and know exactly what Wednesday will feel like.

That unpredictability is one of the hardest parts of living with chronic illness.

I want to be able to enjoy things with my family

This is probably the biggest reason I have changed how I think about mobility aids.

I want to be able to do things with my family.

I want to go places.

I want to make memories.

I want to be there rather than sitting at home because I am frightened that I will not manage the walking.

Of course, I still have to pace.

A wheelchair does not make me immune to ME CFS.

I can still become exhausted.

I will still experience pain.

I can still need to rest.

But reducing the amount of walking I have to do can sometimes make an outing more achievable.

That is worth something.

Accessibility is not just about ramps

I think accessibility is often reduced to whether somewhere has a ramp.

But for me, accessibility can mean having somewhere to sit.

It can mean shorter distances.

It can mean being able to use a wheelchair.

It can mean accessible parking.

It can mean not having to stand in a queue for a long period.

It can mean having somewhere quiet to rest.

It can mean my family understanding that I may need to stop.

These things can make the difference between being able to participate and having to go home.

I have also learnt how useful practical adaptations can be at home. Even something as ordinary as personal care can take an enormous amount of energy when you live with ME CFS and fibromyalgia. I have shared some of the practical bathroom aids I use to make everyday life with chronic illness more manageable, because sometimes it is the small changes that make the biggest difference.

I am still learning not to judge myself

I am not going to pretend I have completely got my head around this.

There are still moments when I feel self conscious.

There are still times when I wonder what people are thinking.

There are still days when I wish my body worked differently.

I miss the freedom of not having to think about mobility.

I miss being able to walk somewhere without calculating the consequences.

I miss being able to stand and chat without wondering how much longer my legs will cope.

I miss not having to think about chairs, sticks, wheelchairs, distances and rest.

There is grief in that.

I think sometimes I have tried to hide that grief because I am grateful for the things I can still do.

Both feelings can exist at the same time.

I can be grateful for my family and still grieve the body I used to have.

I can be grateful that a wheelchair helps me and still dislike needing one.

I can be proud of adapting and still wish I did not have to adapt in the first place.

So why am I using a wheelchair when I can walk?

Because walking is not the only measure of mobility.

Because being able to take a few steps does not mean I can safely or comfortably walk a long distance.

Because standing can be incredibly painful for me.

Because fibromyalgia pain can become overwhelming.

Because ME CFS can leave me with very limited energy.

Because I can become unsteady.

Because I worry about falling.

Because walking slowly can leave me anxious that I am holding everyone else up.

Because I do not want every family outing to become a test of endurance.

Because sometimes conserving my energy means I can actually participate in life.

Because I am allowed to use the support that makes my life more manageable.

I can walk and still need a wheelchair.

Both things can be true.

I am learning that I do not have to fit neatly into somebody else's idea of what disability looks like.

My mobility can fluctuate.

My symptoms can fluctuate.

My needs can fluctuate.

That does not make them any less real.

I am not using a wheelchair because I have stopped trying.

I am using it because I am trying to find ways to keep living my life within the body I have.

For me, that is not giving up.

It is adapting.

And after everything ME CFS and fibromyalgia have taken from me, I think I deserve to keep looking for ways to take a little bit of my life back.

About me

I am a married mother of four children. One of those four children is our granddaughter, for whom we are SGO (legal guardians)/kinship carers. I run a small business and enjoy writing, so I blog. My blog focuses on my family life as well as my experiences of living with chronic illnesses and disabilities such as ME/CFS, spinal stenosis, chronic pain, and fibromyalgia. Oh, and I am only in my mid-40s.

Frequently Asked Questions

• Can you use a wheelchair if you can still walk?

  Yes. I can walk, but that does not mean I can walk far, walk without significant pain or stand for long periods. My mobility changes depending on my symptoms, my energy levels and what I need to do that day. Using a wheelchair gives me another option when walking is too painful or exhausting.

• Why do you use a wheelchair with ME CFS and fibromyalgia?

  For me, using a wheelchair can help reduce the amount of walking and standing I have to do. Fibromyalgia can cause significant pain, while ME CFS can leave me with very limited energy. A wheelchair can sometimes help me conserve that energy so I can participate in things with my family rather than having to stay at home.

• Does using a wheelchair mean you cannot walk?

  No. I can walk, but my ability to walk is limited and can fluctuate. I might walk a short distance with my walking stick and then need to use a wheelchair. Being able to walk sometimes does not mean I can manage every distance or situation on foot.

• Why is standing still so painful for you?

  Standing still can be surprisingly difficult for me. The longer I stand, the more the pain can build, and I can become increasingly uncomfortable and unsteady. Queues can be particularly difficult because I do not always know how long I will need to stand before I can sit down again.

• Do you feel guilty about using a wheelchair?

  Yes, sometimes I do. I can still have thoughts about whether people will think I need it because they have seen me walking. I have had to remind myself that I do not need to prove how ill I am before I am allowed to use something that makes everyday life more manageable.

• Can a wheelchair help with ME CFS fatigue?

  For me, it can help reduce the physical effort involved in getting around. It does not remove my ME CFS symptoms or prevent fatigue, but reducing unnecessary walking can sometimes help me conserve the limited energy I have available.

• Is a wheelchair the only mobility aid you use?

  No. My needs can change. I use a walking stick for additional support when walking, but there are situations where a wheelchair is more appropriate for me. I do not see mobility aids as an all or nothing decision.

• Does using a wheelchair mean you have given up?

  No. For me, it is actually about finding ways to keep doing things. I want to spend time with my family, go places and make memories. Using a wheelchair can sometimes make those things more achievable because I am not relying entirely on walking to get me from one place to another.