Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

Guest Post: 'Lydia's Story.'


Hi, I am Lydia Beier and I have been married to the most wonderful man for 17 years. We have no children of our own; however, through working with youth groups, cooking in camps and just having a love for young people we have been “adopted” by so many over the years. Now some of them are having their own children and calling them our “grand-kids”.

I was born in the Canadian Prairies and moved out to the west coast with my family when I was seven. I went back for grade 12 and university in Saskatchewan, moving to the west coast permanently in 1980. My family consisted of my parents and a sister who was eight and a half years older than me. She left home when I was 8 so we have always said we grew up as only children.

I have way too many to describe in detail but I can give you a basic list.

a. Osteoarthritis and other chronic pain

b. Fibromyalgia & ME/CFS

c. Asthma and allergies

d. Triple fracture of my lumbar

e. IBS

f. Clinical depression & bipolar (both in check for many years)

g. OCD, social anxiety, & panic disorder

h. I have just been diagnosed with type 2 diabetes

i. I have sleep apnea and use a CPAP machine at night.

j. I have some undiagnosed symptoms that the doctors are not sure of and I am tired of tests to find out what they are.

My passions have always been cooking/baking, reading, writing, music and long walks. My mental diagnoses came first and took away my ability to concentrate on reading and writing. As the arthritis set in I was no longer able to continue catering or to walk long distances. Just recently I have regained enough concentration to read in short periods (i.e. a half hour at a time) and my passion for writing has returned – ironically enough to talk about my battle with chronic illness.

I had to give up office work many years ago because the commute and the

atmosphere were not conducive to my mental state. I then went into business with my now husband (web-hosting and development).

After we sold the company in 2005 I went to culinary school (at age 46). I became a caterer and cake decorator for a few years until the arthritis in my legs and hands made me give it up. Now I write which was always a dream.

My depression and bipolar were diagnosed when I was in my early 30’s. The

depression was linked back to when I was eight and the bipolar (known as manic depression then) was traced back to when I was around 16. At eight I tried to slit my wrist because of all the bullying but my sister got home when I had barely nicked the skin. It did bleed and I had to put on a Band-Aid. No one asked what happened and I kept that to myself until my third psychiatrist in my 30’s. At 16 I started having mood swings from laughter to tears in 30 seconds. I was either going non-stop or in a deep dark valley.

My physical symptoms started early as well. I had my cartilage removed from my right knee after a skiing accident when I was 15. The doctor took out the whole cartilage which they don’t do now, but actually left fragments that slowly acted like sandpaper on my joint and knee-cap. That let to arthritis and a knee replacement 10 years ago. Normally they wouldn’t do it before the age of 60 but mine was a serious case. I couldn’t walk. Other diagnoses and symptoms just appeared after that.

I have had many diagnoses over the years and they all had different effects on me. When I was diagnosed with depression and then bipolar (with OCD, anxiety and panic disorders coming along soon after), it was in many ways a relief. It is ironic how people can say you are crazy. When the doctor proves them right you have a great weight lifted because it is not a bad thing, it is an illness that you need to look after just like anything else. I was hospitalized many times for medication changes and went to two psychiatric day programs. It was a dark time in my life as I lost friends and a very good job.

As the physical diagnoses came I have to admit it started getting harder to take. This was for two reasons – if they did find something wrong with me I had to deal with one more thing. If they didn’t find a cause for symptoms I felt like a hypochondriac (I still do and I am to the point where I do not trust most doctors). Once you have either psychiatric issues in your file or chronic pain, you are most of the time labelled as a “seeker”, meaning you go into the hospital or clinic and give some symptoms in order to get medication. I have both in my charts and so clinics and hospitals think they know me and just pretend to look at the symptoms, leave me there for hours and then just prescribe 6 pills (usually hydromorphone) and send me on my way.

Just recently I went into the emergency department of our local hospital and was told to sit in the waiting room and I would be called for blood tests and an ECG. I saw the triage nurse talking to another nurse I had dealt with before but thought nothing of it. That was until I had been sitting there for 2 hours and two other patients complaining of chest pains were send in immediately for their tests and came back out. When I tried to talk to the triage nurse she got up and walked away. I am now at the point of only trusting my GP and 2 specialists I see. One is for my leg and the other a surgeon who has cleaned up the mess after another doctor did a

lot of damage removing my gallbladder.

I do look up symptoms on the internet but I use it only as a guide. If I believed all the things on the internet I would have every serious disease there is! LOL

I have several different types of flares but the most frequent would be my

fibromyalgia. It can cause all over body pain or something isolated like a leg or my back. My osteoarthritis also flares and this is mainly in my hands, feet, neck and back. My moods flare up once in a while still; however, I am very aware of it now and the causes so I am prepared to deal with it before anything major happens. My migraines flare for many reasons including food triggers (caffeine, chocolate, orange colouring, cheddar cheese), sinus problems, stress, certain noises and strobing

lights.

When my pain is in what I call a manageable state it is at a “dull roar”; however, each type of pain is different. The fractures in my lumbar region are a constant ache and there is very little that tames it. I have found rubs that will numb it a little for a short period. Fibromyalgia pain can be either a burning ache or a stabbing pain in various areas of the body. Whether my pain levels are manageable or worse, an acute pain can be the straw that breaks the camel’s back. For instance I can become a total “wimp” when a toothache or sinus headache hit because my brain (which does most of my pain management) just can’t handle any more.

There is no real pattern to my flares. As I said I have several different types of pain and often they will trigger each other. While this doesn’t happen often, when I do have multiple flares at once I am unable to cope and just shut down in a dark and quiet room.

If I am having a migraine, whether it be triggered, I use my migraine glasses and try to stay where it is dark, cool and quiet. If I have to go out or am out when it starts, I use the glasses (Theraspecs) and my Bluetooth headphones. I often just put on a track of waves on a beach because it is soothing and helps filter out other noise which reacts like pain when I am in any kind of flare.

In general, I try to be good to myself without isolating away from the world. Since I seem to have some flare at any given time, if I totally isolated every time I had a flare, I would never come out of my shell.

For migraines triggers can be cheddar and other orange cheeses, chocolate,

caffeine, Arthritis can be triggered by wet/cold weather, too much use of my hands, on my feet too long, etc. Fibromyalgia can be triggered by hot weather but there are so many other triggers as well. It often feels you are in a permanent flare...and fibro fog is very real! I mostly have my mental issues under control but it takes daily work to keep them that way.

I take:

a. Valproic Acid (for bipolar mood maintenance and seizures)

b. Naproxen – Osteoarthritis

c. Flexural – Muscle relaxant for fibromyalgia

d. Gabapentin – nerve pain blocker

e. Cymbalta – pain and depression

f. Meds for cholesterol, acid reflux, edema and asthma

To be honest, whether you have physical or mental challenges, the best thing is to accept you have it and live your life as best you can. You will have days of utter frustration; however, when you do, just remember good times. Make sure to pace yourself – if there is something you really want to do, take the day before and the day after off.

This is a tough question and it would take too long to answer fully. If fact I believe I have answered it in other questions. But I think on the whole it has made me a stronger, better person with empathy for others. Negatively I just can’t do things I want to and that is frustrating.

The main thing that it stopped me from doing was having a family of my own. I got married the first time at 33 to a very abusive and controlling man whom I am relieved I didn’t have children with. My second husband is so very understanding but I was 42 when we married and three years later I had to have a full hysterectomy due to other chronic conditions. Also, I was convinced by a doctor that as a bipolar sufferer I should not have kids because of my unpredictable moods and the chance of them having it as well.

On another totally different note, my physical conditions (mostly my back fractures) have stopped me from a lifelong dream of skydiving. Now that I am 60 and have other physical conditions they won’t even take me for a tandem jump. I have also had to cut back on one of my true passions which is cooking/baking. There are times when I find it hard to even make lunch for myself let alone dinner for two or more.

I honestly can’t see any form of chronic illness NOT impacting relationships, good or bad. When I was first diagnosed with mental illness (depression then bipolar, OCD, anxiety, etc.) it showed me which relationships were strong and which were based on superficial ties. My mother told me when I first mentioned that I had dealt with suicidal thoughts all my life that if I ever killed myself (or even tried to) she would never forgive me. When I did have a close call (which was not suicide but a bad reaction to a mood stabilizer) she made it clear that I was an embarrassment to the family and my sister wanted me put in a group home. I was in my 30’s at the time. Some friends backed away from me because I was “crazy” and I made friends from the world I was now in – psych wards, day programs, etc. These were also not the best fit but it was all I had at the time. I just reconnected with many of my school friends after 40 years. I could be honest with them about what had happened and they were so very supportive. A few even said if they had known they would have been there for me even in high school. That meant a lot. From a physical standpoint, the fact that my pain and fatigue levels govern what I can or can’t do from one minute to the next, it can be frustrating for anyone I make plans with. And for me as well of course. I am learning to not make a full commitment to anything until the last possible time (if reservations or tickets are involved, etc.) and I do not book more than one thing in a 2 – 3 day period. If I am honest with people (and if they understand I have chronic illness), it usually works out fine either way.

To be honest, my faith is what keeps me positive. I know that the Lord has allowed me to go through these things so I can become stronger and able to help others going through the same things. My blog is my way of helping others and I mentor young women as well.

I am 60 years old. I just want to have a peaceful and happy life with my husband, cat and dog. If I can make a difference through my writing then that will make me very happy.

- Medicines described in this blog are prescribed to this individual by their Doctor. Always consult your Doctor about what is best for your needs before taking any medication -

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