5 Things No One Tells You About Recovering From a Stroke

When I had my stroke 16 years ago, I’ll never forget how scared I was when the resident neurologist had me carted off to ICU. I was hooked up to machines and couldn’t move around much. I wasn’t allowed to get out of bed at all. My husband was by my side during visiting hours and when the doctors came in to give me updates on my status. When I thought he left to go home, the nurse told me he was in the waiting room reading until it was time to visit again. He did this for several days to make sure I was getting the proper care.

Once I was moved to the step down unit, a physical therapist came in and started to help me relearn how to pick up items using paperclips and putty as well as walking the halls to regain strength in my right leg. Then it came time to be discharged home. I thought  I’d be able to try doing things for myself such as cooking and cleaning, but I had restrictions until I was cleared by my doctors.  I had to go through physical and occupational therapy three times a week, do my exercises from rehab at home, plus work on other deficits I had. It was extremely tiring, to say the least.

My husband oversaw all of the household tasks, cared for our basset hound, as well as putting in a 50 hour work week. He asked his parents to take me to my appointments if he couldn’t. When he was off, he took care of my needs, encouraged me to never give up, and made sure that I didn’t overdo it when I came home from PT and OT. This was an unknown journey, and nobody told us what we’d be in for.  Every day there was something new we’d have to face together. It was challenging at times, but we’d make it through with patience, humor and determination.

These are some of the situations you may encounter as you recover:

1. You will probably have some days that are very emotional.

I went through a variety of moods after my stroke. I’d get frustrated, weepy, felt useless, and even took my frustrations out on my husband because I couldn’t do much at all. I found out after attending a stroke support group that these feelings were normal.

2. You and your spouse may be scared of another stroke happening to you while you’re recovering at home.

I carried the cordless phone with me around the house for a year. My husband and I were both afraid I’d develop another CVA or worse. He would call me from work several times throughout the day to check on me, or he’d have his mother come over to see how I was doing.

3. You will likely be tested by your hematologist to figure out what caused the clot in your brain.

You will have blood work done to check  for genetic clotting disorders such as MTHFR, Factor V and Protein S deficiency, for instance. If you have Crohn’s/UC and are not in remission, the inflammation in your body can cause the blood to become “sticky” and form clots as well.

I was told by the team of neurologists at the hospital that since my Crohn’s was active, it formed a clot in my brain that caused my CVA. My hematologist tested for genetic disorders anyway to cover all the bases before making a final determination on what type of blood thinner I should be on.

4. You can still develop a clot while taking blood thinners.

If you develop symptoms in your leg such as leg pain/tenderness, swelling and discoloration such as blue, purple or red, seek medical attention STAT. If you have chest pain, are short of breath, experience a rapid pulse, severe lightheadedness, and a cough that may/may not produce blood, seek immediate medical attention.

Several years ago,  I noticed pain and swelling in both my legs. I contacted my vein specialist and had a Doppler done in the office. I was told I had a DVT in each of them. He contacted my hematologist and she put me on a different type of blood thinner to prevent the clots from getting bigger. After several years, the left leg just had scarring. I still have the DVT in my right leg with ample blood flow.

5. Your doctor will put you on many restrictions for a year or more, depending on the severity of your stroke.

My doctor restricted me from doing many things. I couldn’t use the oven, when I showered I had to use a shower chair, I couldn’t clean the house, do laundry, and I wasn’t allowed to drive for an entire year until I was reevaluated again. After a year went by, I was only allowed to drive short distances and had to have my husband drive me to my appointments during wintertime.

I wished I was still the same person as before I went through all of this. I had to learn how to live with my new situation and adjusted to it over time. I know I’m lucky to be alive and count my blessings every day.