Tag Archives: pelvic pain

Local Food

Local Food, earth hour and pain management…

19 Mar 15
Megan
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Today’s post is a little bit of this and a little bit of that. It’s been a while since I’ve done a post so I wanted to share a bit about what I’ve been through the last few months plus bring your attention to our focus for the month of March, Local Food.

Pain Management Update

As many of you would be aware, I have several chronic illnesses which mean I live in pretty much constant pain and exhaustion/fatigue. Over the last few months I’ve been doing as much as I can to reduce the impact these conditions have on my life and have been working towards a part time return to work in the near future. This has included seeing a Pain Management Clinic, and two pelvic pain specialists.

Pain Clinic Fatigue

After my appointments at the Pain Clinic I was completely wiped out.

To be honest, I’m not sure I got much out of the pain clinic. It was another reinforcement that I’m doing the right things in terms of pacing, maintaining what exercise I can, and not continuing medications that aren’t doing anything to help. I was hoping, however, to get some new ideas out of it and that didn’t happen.

 

The pelvic pain specialists have been a little more promising with suggestions of additional/different diagnoses that have potential treatments and a strong focus on pain management for my pelvic floor. It appears my pelvic floor muscles need to learn to relax. Unlike other women, who generally need to learn how to tighten and utilise their pelvic floor, I need to learn to relax the muscles and avoid all core body exercises. I have been given a CD to help with relaxation and various stretches and tools to teach my muscles to relax.

Local Food

This month our focus is on local food and supporting our local produce growers.

Why have we chosen this focus?

Earth Hour 2015 on Saturday 28 March, is focused on supporting local farmers through choosing and purchasing local products. We’re broadening this a bit further and considering the most local of products, home grown…

Local Food - Limes

Our lime tree and our compost bin (behind it).

In our garden we have a lime, an orange, a mulberry and a nectarine tree. We also have a couple of rosemary bushes and two garden beds in which we grow produce. I admit to not being the best gardener and this has been exacerbated with my illness as I don’t have much energy to be able to spend much time in the garden. Despite this we have successfully had some vegetables and herbs growing in our garden for the last 3 years. Usually it’s just herbs such as parsley, oregano and chives. Each year we attempt other vegetables based on what my father-in-law provides us (he grows seedlings for us) and we usually have some successes and some failures.

Local Food - Mulberries

Mulberries straight off our tree

In the last year we’ve had success with broccolini, spring onions, tomatoes, spinach and silverbeet as well as our regular herbs. We currently have our first ever pumpkin growing (rather late in the season) so we’ll wait to see if that is a success as well. We haven’t had much success with zucchini this year.

Obviously we don’t grow enough yet to be able to avoid the shops completely, so when shopping we aim to get local whenever possible. Next time Janelle will be discussing the way in which their house receives it’s local produce delivered to their door. I looked into the same method, however I didn’t have much luck as they don’t deliver to our area so we just do our best with our local stores.

Why eat local food?

There are many benefits to eating local food.

Local food is usually a more sustainable food choice as you are eating fresh, in season produce that hasn’t had to travel far to get to you. If you grow it yourself you know exactly what has been used to grow it and know there are no chemicals being used. If you purchase from a local supplier, you are more likely to be able to find out exactly how it’s been grown as well. You are either buying direct and can ask questions, or if you are really interested you can take the time to visit or call the suppliers.

An additional benefit of buying and eating local food is that you are supporting your local economy, ensuring that people within your area are employed.

Do you eat local food? If so, how do you get it?

We encourage you to consider participating in Earth Hour this year by enjoying local produce and by switching off your lights on Saturday 28 March between 8:30 and 9:30 pm in your local time.


Just One of Many: Difficult decisions with Invisible Illness

09 Sep 14
Megan
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This year’s theme for Invisible Illness Awareness Week is “Just One”.

Invisible Illness Awareness Week 2014

My whole life I have suffered from invisible illnesses. From a very early age I suffered from asthma and allergies. Because I grew up with them I know how to manage them reasonably well (although I’m still identifying and learning to manage new allergies all the time). The newer conditions (Fibromyalgia, ME/CFS and Pelvic Congestion Syndrome) I’m still learning how to manage and live with.

I feel like since I have been living with these conditions my whole life has been turned upside down. Many things have been put on hold or given up. I haven’t worked in over a year, I struggle with social events and I only just manage to stay positive with the limited level of activity I’m capable of.

Lately, I’ve been struggling more than usual with staying positive. I honestly don’t mind that my ability to do many of the things I love has been limited. I don’t really mind too much that I haven’t been able to work for so long and that I haven’t been able to go on the holidays I dream of.

There is JUST ONE thing that I really struggle with and I think it is something many women in my position are likely to be struggling with as well.

Many of my family and friends are either pregnant or have young children in their families. Although I am extremely happy and excited for them, it also makes me sad. Before the new conditions hit, I had believed that by now I would be a mother, or at least we would be trying for children.

Now my life is filled with so much uncertainty. Although I’m told that my conditions do not affect my fertility, many of the drugs I’m on at the moment can OR can affect the development of a baby. I’m not sure my body can cope with pregnancy or with looking after a young child. My bone density is low which means I have a higher risk of stress fractures and very weak bones. My pain is going to increase during pregnancy due to the pelvic congestion and all my other conditions have a 33.33% chance of getting worse as well based on what information I’ve been able to find.

Despite all of these issues, having a family of my own is the number one most important thing to me. Ever since I was a child (possibly even as young as 4 when my sister was born) I have wanted to be a mum.

If I had to choose JUST ONE activity I would like to achieve in my life it would be to have a child of my own.

I have a difficult decision to make and I feel we need to make it soon. To try for a biological child of our own or to adopt. There are treatment options available for some of my issues which I have been told we can’t consider until we’ve finished trying for children.

Whichever choice we make, I know that any child we bring into our family will be loved and cared for. I may not have the energy or strength to be a ‘normal’ active parent, but I will be the best mother I can be. We have a wide network of family and friends who I know would do whatever they could to help us as well.

What is your JUST ONE story?

Are there others out there who are struggling with decisions related to starting a family with multiple chronic illnesses?

International ME/CFS/Fibromyalgia Awareness Day: A letter to my illness

12 May 14
Megan
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Today is International ME/CFS/Fibromyalgia Awareness Day. As mentioned in Friday’s This is M.E. post, today I’m joining in with Sally’s #May12BlogBomb by sharing a letter to my illness. I have decided to include the Pelvic Congestion Syndrome in today’s post as I don’t believe it has an awareness day of it’s own and it is part of my life.

To my constant companions – ME/CFS, Fibromyalgia and Pelvic Congestion Syndrome,

It’s now been over a year since the three of you decided to make yourself known in the most painful way I could imagine. At the time I didn’t know who you were or what your presence would mean to me and my life, but I’ve been learning a lot in the last 13 months.

Before you were here I had a very active, fulfilling life. I worked fulltime in a job I was finding exciting and meaningful, through it I felt I was actually making a difference to how people in the local community viewed and interacted with the environment. I was also a regular attender at my local gym and spent weekends being active with my husband, either hiking, walking or riding most weekends. My husband and I were planning a safari holiday to Africa, which would have been this November. I was going to go see the Gorillas in the wild.

But you’ve changed all of that! Between the three of you, you have taken away my ability to be active, to consistently think clearly and even to get the right words out of my mouth a lot of the time.

All three of you cause constant pain to my body. I am always aching and if I do too much, or eat the wrong thing that ache can turn into sharp stabbing pains or fierce burning. Most days I have to cope with at least one part of my body being numb with pins and needles.

I’m no longer able to lift heavy things or participate in any intense form of exercise for any length of time. In fact, I can only walk for 15 – 20 minutes at a time without the pain levels rising.

Since you came into my life I have been unable to work. Although my doctor believes I am now ready to return back to work part time (3 half days a week), I still struggle to do more than half an hour of any mental or physical activity before I need a break, and I definitely can’t drive long distances yet.

ME/CFS and Fibromyalgia, I believe you two are the cause of my incapacity to think and participate in mental activities for any length of time. The brain fog and extreme fatigue/exhaustion that you cause make it simply impossible for me to focus for any length of time. For a while there you took away my ability to read at all, but recently we seem to have come to a comprimise. As long as I don’t read for too long (less than half an hour at a time) I can now read, but I don’t always remember what I’ve read for very long afterwards.

Thanks to the medicines I’m on to try and allieviate your symptoms, I have constant nausea which interferes with my ability to eat properly. Some days I may be too nauseous to eat anything, others I may feel like I need to constantly eat to feel OK. Again, we seem to have come to a compromise, if I eat 6 smaller meals each day you keep the nausea and bloating to a minimum.

I know so far this letter has been a list of complaints, the negative things you have brought into my life, but I’m also thankful to you, my chronic illnesses. You have helped me view the world differently.

Thanks to you I’ve gotten back in touch with my spiritual/emotional side that has been supressed due to lack of time in my busy life before you came to visit. I have the time to do yoga (for 12 minutes) and meditate daily.

I’m able to see what is really important to me, my family and my ability to help others. You may have made it so that I’m incapable of doing what I previously did in my busy, active life but I have found other ways to connect and to help. Because of you I was able to write the story for the Foggy Frog and the Pain Gang picture book and associated campaign.

You have given me the experience and the time to develop new skills in writing, drawing, advocating and sewing.

I have learnt (or at least I’m learning) to pace myself and use my energy wisely. I spend more time on looking after my health and caring for those around me than I previously did. Staying positive isn’t always easy but it is something I aim to do by remembering the good things I’m now able to do that I didn’t do before, and by remembering that nothing lasts forever.

My doctors don’t seem to know very much about you so this is a journey we’re taking together. Sometimes I feel very alone on this path but I remember you are always there and so is my family. I just need to remember to keep fighting for my rights and for the opportunities there are to minimise your impact on my life.

You may have stalled our plans to travel and to start a family, but no matter what happens I will fight for these plans. To me having a family of my own is one of the most important things that could happen to me. I am willing to go through a period of even more pain from you, Fibromyalgia and Pelvic Congestion Syndrome, if it means I have a child of my own to love and to care for. This is one dream that I will never give up on!

So, although you have brought me constant pain, extreme fatigue and brain fog (as well as many, many other symptoms that just confuse my doctors), I am grateful that you have come into my life. I have learnt so much from this experience so far, and will continue to learn as time goes on. I will find a way to live a reasonably active and fulfilling life again, even with the three of you here with me.

Thank you to my constant companions –  ME/CFS, Fibromyalgia, and Pelvic Congestion Syndrome. You have made me strong.

Until next time,

Megan

Pelvic Congestion Syndrome – What is it?

06 Dec 13
Megan
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I recently realised I’ve focussed a lot on the ME/CFS and Chronic Pain aspects of my illness and have been completely ignoring the one diagnosis that most of you probably haven’t even heard of; Pelvic Congestion Syndrome (PCS).

So I thought I should do a post on what PCS actually is and how it affects me.

PCS is a medical condition that usually affects women who have not yet reached menapause and have had multiple children. My situation, where I haven’t yet had any children, is according to my gynaecologist, rare.

What happens when you have PCS is that the veins within the pelvic area (usually around the ovaries and uterus) become enlarged causing varicose veins. These veins fill with blood over the course of a day causing an increase in pelvic pain as the day goes on.

Here are a few sites that I feel explain this well:

What is Pelvic Congestion Syndrome (wisegeek.com)

Pelvic Pain (Pelvic Congestion Syndrome) (hopkinsmedicine.org)

Pelvic Congestion Syndrome (veindirectory.org)

How PCS affects me

In my case, the varicose veins are all around my uterus. They cause a constant dull ache in my stomach with pain increasing during the day to become sharp stabbing pains by late afternoon.

As with my other chronic pain, the pain caused by PCS, increases 10 fold during my period. For this reason, my gynaecologist has me trialling hormonal birth control to control the pain. We began with trying several different pills which all caused constant nausea and breast pain and didn’t seem to reduce the pelvic pain by much at all, so they were stopped.

Right now we are trialling Depo Provera. Again this seems to be causing almost constant nausea but I have less breast pain and, because it has stopped my period completely, it appears to have lessened the likelihood of an increase in pain at certain times of the month. I still have times when the pain does increase but I don’t know if that is a hormonal thing or not. I have also been having hot flushes quite regularly since getting the injection which I really don’t like. Unfortunately, because it is an injection, I have to wait the 3 months for it to wear off before the side affects should stop. I will be returning to my gynaecologist in February when I’m due for the next shot, but before getting it I think I will go through all these side affects and see what he has to say.

The problem for me is that because I haven’t already had children, it’s been recommended that I don’t attempt embolisation or any other surgical treatments for this pain at this time as they could impact on my fertility. As I’ve previously mentioned, having children is an important part of my future that I do not want to give up so in my mind these treatments are not an option at this stage. As it is I’m concerned of the long term affects of the Depo Provera on my fertility.

If the Depo Provera is a no go at my next appointment, I really don’t know what the next step will be as my gynaecologist has said this was the last treatment he could think of trying. I may just have to deal with the pain naturally for a while until we have children.