The Inevitable Post Christmas Endometriosis Flare Up

My attempts at minimising a flare up over/following the holiday season have drastically failed. Yesterday I had the worse pain from Endometriosis I have ever experienced.

The pain was new, in my lower left pelvic region, quite close to my groin. It was extremely painful to put weight through either leg to walk. I had to take very small steps and hold onto something to ensure I wasn’t putting all my weight through my pelvis. The pain was sharp and crampy. I was unable to speak in sentences. I wondered if it was maybe hip pain as it was so close to my groin. Due to the crampy pain occurring in waves, I guessed it probably was due to endo. I also had the ‘tethering’ pain (adhesions haven’t been surgically diagnosed) in what I believe to be the Pouch of Douglas and on my right side. I initially took 30mg of co-codamol which had no effect. An hour later I took another 30mg of co-codamol. This took the edge off, I still had a lot of pain. I could not sit down straight, even with the amount of pain relief I took. I had to sit sideways and frequently turn as it was very painful on my swollen knee to sit in this way.

I still have the pain today, although it isn’t as severe. I hadn’t taken any pain medicine the day before yesterday until the evening. I guess I should have taken something sooner to keep on top of it.  Today it is painful to pass urine, painful to pass gas and there is absolutely no way I could have a bowel movement. Last night I had some urinary retention. But the pain isn’t as bad today as yesterday. On walking I experience a pulling pain across my lower abdomen.

One Week Later: The pain has persisted beyond the end of my period, as it did with the flare up in the autumn, when we were in alternative accommodation due to the kitchen floor being fixed. I think the holiday season is the cause for this flare up. I tried so hard to pace. My daughter and I went out on most days in the last ten days before Christmas. I felt this approach was better than trying to get a lot of things done on just a few days. Both ways of dealing with the to do list have pros and cons. Due to the finances we had to wait until a couple of days before Christmas to get the last few bits organised.

The most stressful thing however was from lack of understanding and confusing conversations with/from a family member.  Due to my daughters fatigue and symptoms with Ehlers Danlos Syndrome, last year we popped in for a coffee on Christmas morning.  My husband had been told not to bother with this as it wasn’t worth it (?). We actually wanted our daughter to see her Grandma on Christmas Day. In September, during the time of immense stress with not being at home, the family member approached my husband whilst he was at work (in a local hospital) She then proceeded to tell my husband his failings, how we ruined her Christmas Day last year… AND don’t bother coming over for Christmas Day this year as your dear wife takes four days to recover!  Everything that was said, how it was said and where it was said, along with the fact that there was no way to get a word in edgeways was the last straw for my husband. He didn’t argue back. He equally could have said some truths in return. However, even if he wasn’t at work he would not have done this.  He chose not to contact this person after this and left it at that. Later that night there was a phone call from the family member with an apology (of how it was inappropriate to have the conversation at my husband’s work). So we carried on with our life. We managed to meet up a few times. We were told not to bother coming out for a birthday as it was too far. We did anyway. Then the week before Christmas there was a phone conversation with another rant on my husbands failings. This all completely back-tracked from the apology. The confusing part is that after telling us not to go over for Christmas, the person complained that we weren’t going. My ‘four days to recover’ was mentioned once more.

i Wish It Only Took 4 Days To Recover From Christmas… in reality it takes six weeks. This information was taken during a phone call when I was bombarded with many questions about my M.E symptoms. Never did I realise they would be used against me.  But Christmas and school holidays were never asked about, so it was assumed everything takes four days to recover from. But, that was before I was diagnosed with Hyperaldosteronism (which improved my fatigue) and before a couple of endo flare ups (which have worsened the fatigue). I also have my birthday on the 5th January, then Ben’s birthday in the third week. So I have to keep going and organise what is needed for these too.

I am aware that some people need to be educated when it comes to understanding pain and fatigue symptoms in other people. I dislike the fact that a lot of the time what is said doesn’t register with the other person. This is a challenge to move on from as I don’t feel I should justify everything to others. I have a feeling of contempt towards me from certain people with regards to my children’s and my health. I try to rise above it. I could easily move on and not look back ever due to the disrespect I have dealt with. It takes me a long time to process this behaviour and attitude towards myself and my children. It may take weeks or months. I want to move on in the best way for myself and my children whilst treating the people concerned with respect. My main priority has to be to remain as stress free as possible, as this makes my endo pain a lot worse.

My 2017 Achievements

2017 has been quite a challenge.  At times it has felt like the biggest challenge since the end of my first marriage. However, all the building work is over and the kitchen is better than when we first moved in.

As I like to focus on positivity, I thought I would share some of my achievement of the past year.

  1. The ability to drive through narrow country lanes at more than 5-10mph: Whilst living out in the middle of nowhere, the journey back into town involved single lane country roads. In the past I have avoided these whenever I could. This was not possible this year. I was pleased when I slowly improved, eventually managing a speed of 30mph. I was also able to stop safely when oncoming traffic emerged at short distances.
  2. French Plaits/Braids!: When my daughter attended primary school I wished I could style her hair in the styles some of the mums created. I tried a couple of times, but due to fatigue and hand pain I was unable to create one. Something clicked earlier this year and I finally managed to do them.
  3. The ability to reverse the car out of the road. We live on a small road which has a dead end. If you drive down you have to reverse out. I had a very bad neck from this when Ben was on half days at school and needed collecting at lunch time (due to fatigue and pain with his EDS). For some reason I twisted round to look out of the back window. The pain was so bad I was unable to lift my head off the pillow when I was laying on the bed. A couple of months ago I realised I could look in the wing mirror and line it up with the yellow line on the edge of the road. We’ve been living here since 2009 and it’s taken me nearly 9 years to figure that out! But maybe my fatigue has improved enough to have the thought process which led to the solution!
  4. Walking on my own. When I had cardiac symptoms before my Hyperaldosteronism was diagnosed I didn’t feel safe going out on my own. My legs became too heavy with fatigue, my heart rate increased too much and I was very short of breath. Many times chest pain accompanied these symptoms. Experiencing all these symptoms together made me feel unsafe. I was never sure I would be able to get home again. It wasn’t until I began the treatment that I started to feel safe to go out on my own again. Recently I have been walking more, mainly when I go shopping. A few weeks ago I walked into town with my daughter to pick up her glasses. She then spent time with friends whilst I walked to the pet shop to buy some hay for the guinea pigs. There were three choices of ways to walk back. I chose the shortest, steepest route, as it was also the quickest one. All three have big hills, so it didn’t really matter which way I went. A short while in I began experiencing shortness of breath. I carried on. A short while later my heart began to pound. I tried to carry on more slowly, but had to stop. I rang Ben, just to distract myself from the fast heart rate. He said the way I went was steep for anybody to walk up. Next I paced myself by taking 10 steps, then stopping to have 3 slow breaths. It took a while, however, the routine of the pacing allowed me to focus on something other than my symptoms. I knew my heart was ok, as I had tests on it before having the tilt table test. Nothing could have changed that drastically in a couple of years. As the road evened out I was able to walk at a slow, steady pace. When I arrived home my heart rate was 125bpm, so I think it was about 160 at it’s fastest on the walk home. My thoughts later were how great it was that I managed to do that on my own. I felt safe enough to walk up that hill alone. That is amazing! It is so good to have all those symptoms under control.
  5. Going to the vets. This year we’ve had two guinea pigs pass away. About ten days ago, our hamster, Panda, became unwell. I never managed to go the vets with the others, as I knew I was going to cry and didn’t want to be seen crying by others. It was on a Friday and Chris had just returned from work. I didn’t want him to deal with the situation on his own, although I felt very tearful. I just wanted to see if there was anything we could do to help Panda. I managed to hold it together, but did have a few tears when we were told Panda may die anyway. Having done that once will make it easier to deal with next time.                                                                                                         

I am very proud of my achievement this year and hope to continue next year.

Fatigue: Ways To Keep A Balance Over The Holiday Season

our decorations this year

As November rolls on, how many of us dealing with chronic illness begin to feel the dread of the approaching holiday season? As anyone with fatigue will know it’s enough of a struggle keeping on top of everything on an average day. At Christmas there is so much to do and deal with. How can we get through the holidays without increasing our fatigue? I seem to fail every year, but I am always ready the following year to begin the challenge again and see if I can improve on last years efforts.

There is so much pressure on us to make Christmas Day perfect. Why!? It is only one day out of 365 in the year. And how will those of us with chronic illness have a perfect day? We will have more pain and fatigue from attempting to do all we can to create the perfect day. If anything else makes us feel like that through the year we would stop doing it, to enable our recovery. So why do we always try each year because it’s Christmas? I have compiled a list of the things I do to minimise an increase in fatigue. A lot of this is common sense and second nature to those who have been dealing with chronic illness for a long time.

CARDS:

1.  Only give cards to immediate family. People should not expect cards from anyone. As well as the energy used to write and post them, there is also the financial cost to consider and the environmental cost too.

2. Send eCards.  There are a variety of websites where these are available.

3. Make your own eCard. You can do this on sites such as befunky and picmonkey. Once you have created a background add recent family photos- then you have a personalised card. You can make these as simple or fancy as you want.

Free Cards:  I have created some card bases which you are welcome to use.  Here is an example of one. There is a link below to a post with card bases for you to save to your computer.

Here is a link to the cards you can use:   http://bemindfulofendo.co.uk/index.php/2017/11/24/free-christmas-ecards/

PRESENTS:

1. Consider giving money.                                                                                                               

2. Start buying early.                                                                                                                         

3. Buy a gift each week in the run up to Christmas. This can be done with the weekly shopping. Supermarkets are good for gifts.

4. Try and get gifts to friends and relatives before Christmas week.

 

DECORATIONS:

1. Depending on the severity of your illness and pain you may wish to consider not decorating. 

2. Consider decorating early.  This is great if you have older children. My daughter is a young teen. She was keen to have the tree up and decorated so that was done in the second week of November. I don’t mind as it’s one thing less to do closer to Christmas.

3. Just decorate one room.                                                                                                             

4. Only decorate one area in one room. This is what we have done this year. It still allows you to feel festive. Although it isn’t so busy with decorations that you get fatigued just by looking at them! Also, it isn’t much to take down after the New Year.

 

FRIENDS AND FAMILY:

This is the most challenging. How do you share your time amongst loved ones when you don’t have any spare energy as you used it all up preparing for Christmas? Whichever decision you make you are probably going to end up feeling guilty. However, I think this is also a challenge for those who don’t have a chronic illness. But, why do we feel guilty for making ourselves worse in order to please others!? Also, it is very unhelpful and shows a great lack of understanding if people say ‘I’m tired too’.

1. Do what feels right for you. If anyone has a problem with this, remember that it is their problem. Not yours.

2.  Pace meeting up with people. (you may need to alternate between years with who you meet up with). Every year I make the same mistake of planning to meet family Christmas Day and Boxing Day. I have always ended up cancelling Boxing Day as I just can’t do it.

3. Choose a time to meet which suits your needs. If you can only manage an hour or two you need to be very strict and stick to this. It’s easy to get carried away in the moment when you’re enjoying company. This is also why I have always had to cancel meeting with people on Boxing Day. Sometimes it’s worth going over your energy limit, but other times you need to be more careful. Remember that Christmas and New Year are a bit of an energetic marathon, especially when you have children (or children in the family). You really do have to pull back to get through the other end still on your feet – or even just being upright in a chair! Usually just the Christmas preparations and the busy-ness of Christmas Day push me to my fatigue limit. I then need to pull back in order to quickly get back to my base level of activity.

4. It is okay to stay at home if you need to.  Again, if this is what you need to do to minimise a relapse then do this. As with the suggestions above, if people have a problem with this, it is their problem.

 

EMOTIONS:

1. Allow yourself to go through your emotions. This time of year can trigger many emotions, memories and remind us of our previous ambitions and goals. Let all this pass as they drift through your awareness. Cry if you need to and remember it is okay to cry. Most of the time I feel better for having a cry. Then I am able to become grounded and move on.

2. Tell those you live with how you feel. This is very helpful with dealing with the frustration of wanting to have a ‘normal’ life by joining in the celebrations. It may also help deal with the pressure from others about meeting up when you are unable to.

3. Accept the life you have now. Probably the most difficult challenge on this list. It may take years. But each year we go through this, little by little, it gradually becomes easier to deal with. I remember one New Years Eve when I heard the fireworks in town. I cried because I couldn’t go down there and see them. I cried because I spent so much of my time resting and everything I did made the fatigue so much worse. Now when I hear the fireworks I am grateful that I once was able to see them. I appreciate all I have achieved in the year and look forward to another year of spending time with my family.

How do you manage your fatigue over the holidays?

 

 

 

 

Free Christmas eCards

Sending eCards is a great way to manage fatigue symptoms in the run up to Christmas. All you need to do is add one of your images (by using an online editing programme). Then send away to all your friends and family online. You can either send them through email, or simply upload to Facebook and tag everyone.

Here are a couple of cards I have created. This is a great way to send a personalised card. You can get two tasks done by sending a Christmas card and sharing updated photos of family.

Here are the blank cards. You are welcome to save an image of these onto your pc/device and use them freely.