Life with Chronic Pain
By Karen Theobald

So what is it like to live with chronic pain every day? It is different with every person who lives with it daily.

Karen's Story
I have Non-Hodgkin's Lymphoma (a rare cancer variation whereby it is in my bone). Sometimes cancer patients have no pain at all, others have intense continuous pain 24/7. I come in to the 2nd category (just my luck!).

Also at my last review with my consultant, it has been found that the pain I am experiencing in my right leg is arthritis. I know what pain this causes as my brother has Rheumatoid Arthritis. My only hope is that it does not get that bad, Non-Hodgkin's Lymphoma and its side effects are bad enough to deal with on a daily basis thanks.

Pain as a by product of Cancer
Chronic pain is normally associated with diseases such as Rheumatoid Arthritis, arthritis in general or variations such as ankolysing spondolitis. Cancer pain can also be described as chronic.

I was in extreme intense pain around my knee area in my left leg. It was taking me more than 20 minutes just to get up the stairs at night. I only made this trip twice a day. Once to come down in the morning and once to go back up at night. I was prescribed a variety of painkillers. I started off with anti-inflammatory drugs and then on to stronger and stronger drugs until finally I was on continuous morphine, and liquid morphine. Nothing helped with the pain that I was in.

How Life Changes
I went from a “normal working woman” to someone who was unable to walk and had to use a wheelchair to get around, and then graduated to a walking frame. I was in danger of breaking my leg so easily. The cancer had eaten through my bone and it was full of holes. I have since found out that I did have a fracture of my leg which I was never told about. It is like being an old granny when in reality I was in my late 30’s. You know the saying “you’re as old as you feel” well sometimes I feel like a 90 year old. Imagine what it’s like when OAP’s ask you if you’d like a seat?

I was unable to drive anymore, and have not driven now for 1 ½ years. It is strange and disheartening to lose your independence. I have been unable to go anywhere without someone by my side for so long now. I hope to be able to go back to driving sometime, but with all the drugs I am on at the moment, it is not safe to do so.

Side Effects of Treatment
Having just finished chemotherapy and radiotherapy, this then caused other problems which included gallbladder attacks whereby I had to have morphine and pethidine injections. The pain was so excruciating all I could do was lie there and cry with the pain. When we phoned the emergency doctors they said “we can hear her and she’s in the other room, no choice but an emergency ambulance). I eventually (after nine weeks in three hospitals and two ERCP operations) had my gallbladder removed. This finally stopped that pain which was a huge relief not only to me, but also to my family as well. No more midnight trips to the A&E (ER) department.

Following on from the radiotherapy this caused side effects again. I now have recurrent cellulitis, fibrosis and also Lymphoedema. It is the Lymphoedema which is causing chronic pain again. Once more I find myself on continuous morphine and also Gabapentin (18 tablets a day!) which is normally associated with epilepsy but in my case is used to try to help the nerve pain which was caused by the radiotherapy damaging the nerves during treatment for my Non-Hodgkin's Lymphoma.

Although I have now given up the walking frame, I still have to walk with a stick or crutches. Walking around the house is OK, but more than a few steps and I need a stick to lean on, and after a short walk, I need sit downs more often and suffer intense pain afterwards.

Getting Through Each Day
Living with constant pain is draining, it makes you so tired – even just a short walk is enough to make you sleep for several hours. Sometimes people get snappy and have short fuses (I know people who have mood swings quite dramatically sometimes).

Being awake is painful, and trying to get some sleep is just as bad. With pillows in the bed to keep your leg on to stop the shooting pains is awkward to say the least. Then just as you get to sleep it is time to wake up. Your body clock gets all out of synch and you find yourself nodding off at odd times.

To cope with the pain I use some “diverting tactics”. Something (anything!) to take my mind off the pains. I like using my computer, and have created my own website (www.thefurrymonkey.co.uk) to tell all my friends and family what is happening to me. It has had over 55,000+ hits, so has obviously helped lots of others going through the same thing.

I also make handicrafts (when my numb fingers allow!). For example, I crochet blankets (easier than the cross stitch I used to love doing) for local animal charities from odd balls of wool we have. It tidies up the house for one, and we help the animals whilst it also helps us as well.

Reading is also another hobby that is easy to do if you are in pain, it takes your mind of it. Get into a comfortable position (as best as you can – I know it’s difficult) and escape into another world.

When you are at home, and it’s difficult to get out you imagine you are the only one. You are not. There are thousands of people with similar problems as you, but you only see your own problems.

Starting Over
It takes a while to adjust to a slower pace of life. The world is fast paced. Comments are sometimes made which is not nice as it’s not your fault, but people can be very hurtful. I remember hearing people talk loudly about me when I was in a wheelchair and had no hair due to the chemo. Everyone knows what is happening when someone looks like that, but do they stop and think? No, they don’t. Imagine how that feels when you are at your worst, and chemo is making you so sick.

Other people understand these to a degree, but with cancer there are also other associated problems caused by having the disease itself. You need to come to terms with things in your head and get things clear. You need to ask questions and get answers. Although some people don’t want to know, I am one of those people who want to know as much as possible. The more we know the better armed we are to deal with things.

There are new medical innovations and drugs being invented all the time, so who knows they may find something that will help ease all our pain (or at least some of it!). We live in hope!

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If you’d like to ask me anything about the above article, then please just send me an email (karen@thefurrymonkey.co.uk) and I’ll reply to you all. Thanks for taking the time to read my thoughts!

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