What To Do When You Don’t Know What To Do!

(Including a Health Update)

Sometimes the path ahead in life can seem a little unclear.

Sometimes we are faced with a range of life choices, almost too many, which often complicate matters and require a great deal of thought….too much thought!!

Sometimes we have limited choices, none of which are particularly helpful, so instead of moving forward we feel paralysed.

Add in chronic illness, plus the restrictions surrounding our diseases, and when we are faced with forks in the road it’s can all become so complicated.

So how do we deal with the crossroads in life, a change of direction, a smorgasbord of opportunities?

The Cheshire Cat Approach

In Lewis Carroll’s famous novel, “Alice in Wonderland”, there is a lovely scene in the story, where Alice meets the Cheshire Cat as she comes to a fork in the road.

Alice: Would you tell me, please, which way I ought to go from here?


The Cheshire Cat: That depends a good deal on where you want to get to.


Alice: I don’t much care where.


The Cheshire Cat: Then it doesn’t much matter which way you go.


Alice: …So long as I get somewhere.


The Cheshire Cat: Oh, you’re sure to do that, if only you walk long enough.

Lewis Carroll, Alice in Wonderland

Maybe this is a good starting point. Maybe we should ask ourselves if we actually care about which direction to take.

Alice’s response to the Cheshire Cat, when asked the question of where she wanted to go, was she didn’t really care. She just wanted to get somewhere.

I think this is the morale of the story. We all want to get somewhere. None of us, if we are honest, want to remain stagnant in life. We want to grow, learn, achieve, have purpose, move forward, or affirm we need to do nothing.

If, once weighing up all our options, the best decision is to do nothing, then even doing nothing is doing something! At least we have thoroughly thought it all through and should have a sense of peace as a result.

When living with Chronic Illness, there are times we do need to do something different in order to move forward, despite often feeling incapable of doing so. We need our chronic situation to be as easy to live with as possible.

Even if you know you have a progressive, non treatable disease, there are often cross roads in the journey. Decisions for your future care etc may need to be made. Often these crossroads have multiple choices, all of which are sound options! You get a headache just thinking about it, let alone taking action.

Let Me Give You An Example

My disease is here to stay and will get worse. We know it, we accept it.

Does it mean life just stands still while we wait for the disease to do its best?

Of course not. I’m alive and I need to live while there is still life in this body. There may still be options available to help me manage my disease better. If I stop moving forward, I might miss them.

My husband and I have been considering life changing financial decisions. Medical costs, and the rising cost of living, are forcing us to think about selling our home to release some equity, so we can survive the next chapter of our lives without worrying about how to pay bills. Ideally we need to find an affordable home already set up for full wheelchair access. It’s a huge decision to sell and move, especially when I’m struggling even to move from one room to another.

The other option is to stay put and work with my Occupational Therapist to renovate our existing home, with the cost funded through my NDIS package, allowing us to stay where we are. It won’t relieve our daily financial pressure but it will alleviate the pressure of moving. I’ll just have to do some creative budgeting. Good job I’m an ex banker!

Then this week there were complications I didn’t see coming. I had two Specialist appointments booked. Both were videoconsults so I didn’t have to go anywhere, and both were routine so I had no reason to be concerned.

However both contained news I didn’t see coming. The first appointment was with my Spinal Specialist. My regular readers will know spinal surgery has to date been ruled out, because my bone disease has made the integrity of my bones so bad. This means the risk of major complications is guaranteed.

You can imagine my surprise when my Specialist looked at my latest MRI and said, “Sam, we need to consider surgery.

Apparently the instability in my spine has worsened and is tilting both forward and backwards. To me it feels like it pivots and it’s a horrible feeling. Despite all the severe surgical risks remaining, my Surgeon is now concened a nursing home is imminent for me if we do nothing, as well as a permanent wheelchair. He wants me to take the next few months to seriously think about it. This is a huge fork in the road.

Two days later I had my Hematologist appointment. This was a routine review to monitor my iron deficiency anemia. The good news was my iron levels, post my iron infusion, were all good. However after receiving the good news my Hematologist paused and said, “Sam, something else has come up that I wasn’t expecting.”

And then another bombshell was dropped. My blood tests show I have an elevated IGM paraprotein. He asked me if I had any new symptoms. We discussed a few new ones which only made him more concerned. This particular paraprotein is indicating I may have lymphoma.

He’s a fantastic Hematologist and I’m in very safe hands, so we came up with a plan I’m really happy with. He’s going to run a series of blood tests in 4 weeks, including checking the paraprotein level, and we will have another videoconsult to review. If everything continues to point to lymphoma he will he do a CT scan of my lymph nodes and we will take it from there.

So Where Do I Go From Here?

So the question really is “where do I want to get to?”

Alice told the Cheshire Cat, she didn’t care, she just wanted to get somewhere.

I get that. I want to ensure I’m moving forward, leaving no stone unturned and being as prepared as possible for the future, whatever it looks like.

So my answer, to the question Alice answered, is similar but also slightly different.

It’s different because I do care. I care about my future and my husband’s future. My fork in the road relates to my disease and possible cancer diagnosis. My health is intrinsically a part of me, so I can’t help but care about which way I go, which path I take.

My answer is also similar to Alice’s, because I want to get somewhere. I don’t want to just roll over, give up, give in, or act as if life is completely over for me. I want to keep moving forward and making the right decisions.

So I have a number of options I’m juggling.

  • Do I decide to go ahead with surgery, despite the dire warnings from my medical team of possible severe complications, including not surviving?
  • Do I start using a wheelchair inside my home now, rather than a walker, to protect my spine?
  • Do my husband and I stay in our existing home and work with my Occupational Therapist to design a renovation plan that will cater for my current and future needs, or do we sell and buy a home already wheelchair friendly?
  • Do we consider moving into a retirement village that includes independent living, assisted living, nursing home facilities and palliative care?

So as you can see from my list of possible future options, sometimes crossroads present multiple choices. The more you think about them, the more you feel like you are on a massive roundabout, rather than a simple fork in the road!!

So What Do You Do When You Don’t Know What To Do?

It’s actually pretty simple…..do something!

Doing something is better than doing nothing. If we stick our head in the sand and hope our fork in the road will just disappear, we will never move forward, never grow and never know if something good is up ahead.

Often with chronic illness it really is a case of not having anything to lose.

If you have multiple options presenting at your crossroad, I know it can be overwhelming. Prioritising is the key.

Look at your list and start numbering them from most important to least important.

Once you’ve done this, your all set. You simply start with number one on your list and move forward with this option.

If option one progresses well and you’re feeling brave, you can start moving forward with option two.

It might be option two is where you stop with your multiple choices, as you find you are on a path moving you forward, providing you with new goals and purpose.

From my list of multiple choices, I have whittled it down to a “top three” list of “moving forward” options.

  • Work with my Occupational Therapist in the New Year, to review renovation options to our current home. My health and fatigue, plus possible new diagnosis, make selling and moving much more difficult.
  • Talk to my other Specialists in the New Year about Spinal Surgery, and seek their advice in terms of risks.
  • Take time out over Christmas to simply relax and gain some strength to tackle the above. I want to prepare myself for the very real prospect of having the lymphoma diagnosis confirmed, and requiring chemotherapy etc

This is what the Lord says: “Stand at the crossroads and look. Ask where the old road is. Ask where the good road is, and walk on that road. If you do, you will find rest for yourselves

Jeremiah 6v16 ERV

Now It’s Your Turn

Are you at a crossroads? Are you looking at a fork in the road, or perhaps feel like you are going in circles on a roundabout of multiple life choices?

Well, now it’s your turn to simply write down all those options taunting you, so you can move forward and not stay stagnant.

You don’t need to know where everything is going before you get there, you just have to go somewhere. You just have to keep moving.

We all have different physical and mental capabilities and our lists, our forks in the road, will be so very different. They need to be. They are unique to you, special to you.

You are special and you deserve to have options to move forward.

Don’t be afraid. Take your time to list your options, prioritise them and go from there.

I’ll be thinking of you and cheering you on.

Take care

Sam xx

Medical Musings with Friends

If you’re looking for genuine support, care, understanding and friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic and complex diseases, who truly understand the daily challenges. A warm welcome awaits.

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9 thoughts on “What To Do When You Don’t Know What To Do!

  1. I pray you and Peter both get some real good restful moments to enjoy your Christmas season! And when it comes time to make these decisions that the Lord will give all your team of Dr’s wisdom from above to give you clarity in which options are best for you moving forward on all fronts. I pray peace over you! Thank you Sam for being such an encouragement and for sharing your story with all who need it.

    Liked by 1 person

  2. I am not facing one of these decisions just now. But I have and I came out OK despite what seemed like an untenable situation. What did I do?

    I went the way that seemed most likely to protect Sheryl’s future. Sheryl picked the option that best protected me. Together, we picked what Sheryl wanted. Did you have any doubt? Hey she is tough and she scares me.

    Liked by 1 person

  3. “Just do something” and keep moving, I agree with that sometimes because indecision and the fear that comes with painfully not knowing what to do can be all-consuming. But my gosh, Sam, you have a complex range of data and options to weigh up and new news coming at you from all angles. I’m glad you’re in good hands with your medical professionals, and at least there’s a plan for more tests in a few weeks’ time. Whatever happens, wherever you go from here, please know you have so many people – in your offline life and online too – that love you and are rooting for you. Sending lots of love xxxxx

    Like

  4. Thanks so much Caz. You are such a sweetie, especially when you have so much going on too. I’m keeping you in my thoughts. Keep warm in that snow and I hope Christmas is relaxing and peaceful for you. Lots of love xx

    Like

  5. I just want to share my parents journey in a retirement village. They’ve been they’re several years. The ability to move easily back & forth between the levels of care has been life enriching. My dad is now under hospice care. When he was in the nursing facility, mom was easily able to use their transport to visit. All the caregivers are familiar because they move among the facilities. Dad is now home under hospice but they have all the daily support they need to move through this phase of life. Sending my love to you for a gentle way forward.

    Like

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