What can I eat?

I have always been somewhat of a fussy eater. My nana would work around it in sneaky ways. For example, I do not like onions. She would chop onion up so small and thin that I wouldn’t see it in mince or the stew she made. She would tell me that she made mince/stew especially for me, without any onions. As I grew older, I realised what she was doing, but I still ate the food that was “made with no onions”. To this day I can only have onions if they are so finely cut and hidden in my food.

I was always really fussy with meat. I would only eat it cooked in a certain way but did not like it if it was different. Looking back, I must have annoyed anybody who had to prepare food for me. About three years ago, I went to a festival and did not want to eat any of the meat options. I was worried that it would not be cooked properly and I would be ill. The idea of being ill in a tent, in the middle of a field with no toilet facilities other that portaloos (portable toilets) really scared me. It would be a horrible experience. In fact, since then, a friend has told me of an experience at a festival where they got food poisoning from eating pizza at a festival. They can confirm it is a horrible experience! So while I was at the festival I ate a vegetarian diet. This continued to a degree once I got home. I cut out all red meat and poultry. I did not see this as an issue, I didn’t miss the meat and I had been fussy with it anyway. However, I do like tuna and I like mackerel so I decided I would continue to eat fish. I did decide to eat it less often though. There’s a running joke amongst some of my friends that I am technically pescatarian (as I eat fish) but really I am just a bad vegetarian as I only eat tuna and occasionally mackerel.

As you can tell from above my diet is largely plant based. I do still eat tuna and mackerel. I think this is important as they will provide me with omega 3, which is good for the brain and joints. I still do not miss red meat or poultry. My family still continue to eat meat. I was content with my own diet choices.

When my back pain started (which was what started the investigation as to what was ‘wrong’ with me), I started to notice some irregularities with my digestive system. As time has went on, I’m noticing more. The pain and cramping that I get in my stomach, the bloating. I am often full of gas. It hurts. A doctor has told me that it is “just a bit of stress”. To be fair it could be due to stress, it could be down to my medication and the medication changes that are happening through the process of finding what works for me, it could be as a result of my anxiety or fibromyalgia or it could be something totally unrelated.

I have been keeping an eye on things lately, and I’m trying to see if there is any kind of pattern to the problems. This is difficult as I keep forgetting to write down some of the information. I have been thinking about different things – Should I be eating or avoiding certain foods and drinks as I have fibromyalgia? Could I be allergic to, or have an intolerance to, particular foods or drinks? Am I eating all the wrong things for my illness? Is there anything I can do through food and drink that could help my pain, my anxiety, my fatigue?

In my search for answers I have thought of a few things.

  1. The anti inflammatory diet. There is a lot of information online about certain foods and nutrients that are good for inflammation. The current understanding of fibromyalgia is that it does not cause inflammation to the joints. However, I had recurring blood tests that showed unmarked markers showing inflammation. Now that is not to say that it is my joints that are inflamed, it just means that there is some inflammation present in my body. It worries me sometimes that I don’t know why I have markers indicating inflammation but it could be down to so many reasons. Could eating an anti inflammatory diet help this? I guess it could.
  2. An elimination diet. An elimination diet takes a long time. It is when you take something out of your diet and later reintroduce it and note any reactions that you and your body has. I like this idea in theory. I do not think it will work for me at this point in time. I feel it will require more willpower and concentration than I can give to it.
  3. Go to a nutritionist. Another thing that could help is possibly going to a nutritionist. They will have the expertise and knowledge to hopefully make suggestions or a plan for me highlighting important nutrients and vitamins and the best food to eat to get them.
  4. Get a intolerance/allergy test. This one links to going to a nutritionist, although there are ways to get tested without having to go to a nutritionist. There are home tests that can be purchased and you send it to a lab for testing. I believe it is samples of your hair that you send away to the labs.
  5. Other testing. This scares me but it is another possibility. There might not be anything, or very little, that can be done differently regarding my diet. I may need to get further testing to get things ruled out or found.

I am going to do some more research into all the options above. I may even come up with more options to look into. I am definitely going to discuss it with my doctor too. Doing research and finding out options is good to do, but it is important to discuss them with doctors and get medical advice first! I do not know why I seem to be having more digestive problems than what I did but it is something I would like to try and help my body with. I have zero answers to any of the questions that I am constantly fretting over. However, I am on a journey. I am on a journey of getting to know my body better. Getting to know my symptoms better. Learning triggers and trigger points. Learning to listen to my body and find when it is OK to push it a wee bit and when to stop and rest. On top of that, learning more about fibromyalgia and anxiety and finding things that help. There are going to be a lot of times I’m sure I am going to be very frustrated when things don’t work but I still need to try. I need to try and find things that will help me have a good quality of life and to have, at least some, control over my symptoms.

Tough Week…

This week has been a tough week. I don’t even mind calling it a tough week, it has been difficult! I don’t think any particular thing has made it hard, it just has been. The pain has been close to unmanageable at times. I have been physically sick. My digestive system is clearly having some issues, and my stomach feels like it is constantly churning. I have been overly anxious. The fatigue has been horrible, and yet it is difficult to sleep. On top of all that I have been unable to do anything without ending up in tears. Just one of these ‘sensations’ can be difficult to cope with but put them all together and it just feels like too much.

This week I have been feeling like a failure. I have failed to get out of beds. I have failed in being a family member. I have failed in being a friend. I have found it difficult to cope.

In saying all that I have tried my best. I have tried to help my sister, by trying to run a few errands for her while she was at work to help her get ready for her holiday. I have tried to go to a yoga/pilates class to see if that would help. I tried by making sure I went to my appointment with the pain relief nurse. I tried to have a family day out with my nan and uncle. I tried to go over to my friends house. It all just ended in tears.

I don’t know why I am having a particular hard time of it this week but I am ready for this new week. A new week is coming and I am hoping for it to be better. I am hoping to be able to see my friends. I am hoping to be able to spend more time with my family. I am hoping to be able to continue to try working on myself both physically and mentally. I want my body and well-being to feel better, and to be better. As ridiculous as it sounds, I want to cry less this week. I don’t know what this week will bring but I am optimistic that it will be better.

Celebrations

So far this month there has been quite a few celebratory events occurring in my life. Just like everybody else I look forward to events worth celebrating. There is nothing better than gathering with loved ones to celebrate milestones, achievements, birthdays, anniversaries, anything really. Celebrating creates memories, which more often than not become life’s most precious moments. Although I look forward to celebrations there is a part of me that dreads them. I worry about how my body will react at occasions. Will my pain levels stay at a level that I can cope with? What are people going to think/say about me if I have to leave early, if I cry, if I get overly anxious? The stress from this alone can bring about some not very nice symptoms. It’s a difficult cycle of stress. Even with this feeling of dread, spending the time celebrating with my family and friends create precious memories to be treasured throughout life.

My Birthday

This year I wasn’t in a celebrating mood. It was my first birthday without my nana here, I am in the middle of a flare up and I was in constant pain. I am not one to usually freak out about age but I felt so exhausted and my pain was really bad that I felt old, add that to the phrase “turning a quarter of a century” I really was not in a celebrating mood.

My best friend, Claire, told me that I had to do something for my birthday. She said I deserved to celebrate. I’m so glad she insisted I do something to mark my birthday, as I ended up having a really nice few days. Yes, days! Plural!

On the night of my birthday Claire, my sister Kaitlyn and her boyfriend Connall and myself went out for dinner. Afterwards we came back home where Kaitlyn surprised me with a birthday cake. We all had a good laugh as she started singing ‘Happy Birthday’ and she accidentally blew the candles out. She just stopped, turned around and went and lit the candles again and started over while pretending that this was not a second attempt. Kaitlyn’s reaction is what made the moment so funny. Afterwards we all watched Moana and had a laugh and cry together. I was very sore and had to move about a lot whilst trying to get myself into a position that I had the least amount of pain. My movements were not helping in the slightest, however I was in the house and I was with my loved ones so it was ok not to be fully ok!

The next day I was treated out to lunch by my big cousin. I was only out a short time but I had a lovely time catching up. She seemed to know when I could not take much more and took me home. I had to go and lie down, as I was exhausted and in quite a bit of pain, for a while but I was glad that yet again, I had such a nice time with a loved one.

The day after that myself, Claire and my good friends Hazel and Cat met up and had dinner together. It was so good spending some quality time with them. It is not very often that we all get together. That day was difficult, after the last two days I was very tired. It felt like lightning bolts were being shot down my back. The girls were amazing, they understood that I was sore and they also took into consideration that I hadn’t been wanting to celebrate my birthday. The plan was dinner and cinema but the plans were flexible. They told me that the plan was all depending on how I was feeling. If I was too sore to go and sit through the cinema then we were not going to go to the cinema. It meant so much to me! Especially when earlier on that day I was messaging them that I couldn’t make it. I’m glad I went. I’m glad the girls were flexible and went with the flow, just feeling our way through the occasion with no set in stone plans.

The next night I went a walk with my other big cousin. He gave me my birthday gift and we had a good time walking and talking. He let me set the pace for the walk and nearing the end of the walk I was struggling and he linked arms with me and supported me right to my door.

All the gifts I got for my birthday were perfect. They were all about self care and activities that I enjoy, that I find calming. I really am lucky that I have the most considerate people in my life. They walk at my pace (no matter how slow that they find it), they seem to understand that I maybe cannot spend very long out with them before I have to leave, they understand that I may need some extra help while out or I may get emotional and still they stick by me!

Kaitlyn’s Graduation

This year has not been the easiest year for Kaitlyn. It was her honours year at uni so she already knew it was going to be quite tough. During this time, life seemed to just throw so much at her – hardships at work, getting a new job, going through a breakup, starting a new relationship, helping care for my nana, helping to care for me, the death of my nana. All of that is difficult in themselves without adding in being a fourth year student. However, she has managed to overcome everything and passed her course. This week she graduated. I could not have been any more proud of her. She looked absolutely beautiful! She picked an off the shoulder shirt and a classic straight skirt which was a fabulous combination. During the run up to her graduation day, she asked me if I was going to be ok at the graduation, she did not want me getting too sore. How amazing is my sister? I replied to her that I did not care how much pain I was in, I was going to be at her graduation no matter what. The graduation ceremony took place in a church. To get into the church there is a lot of stairs, and the pews are not exactly comfy. I was also rather ‘foggy’ that day. I accused my dad of moving my booklet with the graduation order when it was in fact me who had placed it where it was just minutes before. I was one very proud big sister hearing Kaitlyn’s name being called and watching her cross the platform to be capped and to get her hood and degree. A tear may have been shed…. Any pain I experienced that day was worth it! No way was my conditions taking away such an important event for my sister away!

After the graduation ceremony and reception we came home and all of us changed straight out of our formal clothes and into comfy clothes. Formal clothing was not designed for people in chronic pain. It’s heavy, and thick and it was such a relief to get it off (I was wearing a tailored dress). We all then went out to dinner together in comfort and then Kaitlyn and Connall went off as they had their own plans.

A work mate’s birthday

A girl I work with will be turning 21 in a few days. For the past month or so there has been a lot of secret chats discussing ideas of gifts and a night out was planned. I knew that the way my condition is at the moment that I would not survive a whole night, and I did not want to put a damper on any of the celebrations. So I said from the offset that I would only attend the dinner and not the ‘few drinks’ that would follow. The plan was that she would know that she was going out for dinner with a few people. Everybody else, myself included, had told her that we were unable to join her on a night out for one reason or another. Then when she came into the restaurant there would be a big bunch of us sitting there to surprise her. Somehow, the secret was kept and she was indeed surprised when she arrived at the restaurant. I was so glad to be part of celebrations for her birthday.

My tummy had not been very good that day. It had been making a lot of dangerous noises and doing flips all day. I was exhausted, showering took so much energy from me that I had to lie down a large chunk of the day until I really had to get ready. Despite this and the pain that I was in, I managed to get my hair to a fairly presentable state, put on a dress and I even managed to put my make-up on. I felt somewhat presentable when I left the house. I did not look so presentable when I came home. After the dinner I managed to walk, with some support from my team leader, from the restaurant to the first pub in their plan for the evening where Kaitlyn came to pick me up to take me home. When I got home I took a wee selfie, as you do, and it is shocking the amount I changed in not even being out the house for two whole hours. My make-up was a mess and smudged, I had massive bags under my eyes from being so fatigued (clearly not helped by the smudged eyeliner and mascara!). I thought I looked like I had been out all night drinking… All I did was go out for dinner! It was enough to take it out of me!

Fibromyalgia sucks! People see a young person, and they do not see anything “wrong” with me. People think you are being dramatic if you say you’re tired, or sore at my age. They don’t see the chronic pain and don’t understand the fatigue.

All this celebrating has taken its toll on me. I am so exhausted, I am walking funny, the pain I am has increased and I have had to spend a lot of time resting. However, through these celebrations, even if I was only able to go out and join in for a short while, I have had such a laugh and felt so much warmth from the people that I spent time with. Yes, it all made me anxious. Yes, it all gave me a lot of pain. Yes, it sucked a lot of energy from me and took a lot of effort. Yes, I was nearly cut short when needing the toilet. Yes, I had to leave celebrations early. Yes, I have had to spend a lot more time resting and I have had to spend time not being able to move. But do you know what? It has been worth it! I managed to help celebrate with my friends and family and that has been great!

If you have a ‘condition’ any kind of condition, visible or not, when occasions arise that should be celebrated, if you are able to get out to join in, GO! Attend that dinner, attend that pub, go and join in. Even if you can only go for a short while and have to leave early. Even if it looks like you will just be there fidgeting, when really you’re trying to find a position that your body is not screaming at you. Go and make those precious memories. However, if you cannot go, try and be kind to yourself! Do not beat yourself up about it. Send that message or make that call letting that loved one know that you love them but unfortunately can’t make it out but you hope that they enjoy their time. Hopefully they will understand, it is ok, not to be ok! After all, there is always time to celebrate some other way, some other time. Plus, you never know, the celebration might just end up spreading itself out over time just like my birthday did over various days!