This subject is a bit ‘ta-poo’… 

OK, so I don’t really know how to start so I’m just going to take the plunge and dive right in with this one.

Nobody really wants to talk about bowel movements! (if you are somebody that finds it uncomfortable then I wouldn’t read any further.) It is something that has never bothered me though. I think it is because I used to be a support worker and had to help with personal care many times, to me it is ‘just one of those things’. In fact, at every work outing we had we always ended up talking about poo – even through dinner. I sometimes forget that it’s not a topic of conversation that is so readily accepted though, and I do admit that sometimes I probably should read the room a bit better at times. However, if somebody asks me how I am or what has been going on and I’m having particular bad digestive issues, I’m going to say so.

So recently, I’ve been having particularly bad digestive issues. It’s been hard. I’ve been sick, I’ve had diarrhoea and I’ve been constipated and it’s really frustrating. Not only is it completely inconvenient but I can’t seem to find any pattern to it. I am also suffering from really bad abdominal pain. It’s horrible. Truth be told, I was actually considering going to A&E earlier the pain was so bad.

Although I can’t find a pattern to try and see what is causing diarrhoea or sickness, one thing I have noticed is it seems to involve food. Not any specific food, just food in general. I feel like whenever I eat something, my body wants it to come out. Sometimes it wants it to come straight out! And, truthfully I don’t think it cares as to how it happens so long as it’s out. I have found that it is after I eat that I need the toilet, sometimes right after eating, sometimes a wee half hour after but I need to go. Sometimes after eating,I feel sick. Sometimes I am being physically sick. Again, often it is straight after food, sometimes I have some time. It’s a very strange sensation. There are times where it feels like food isn’t going down, as though I’m not swallowing it properly. It feels like it just goes to the back of my throat and sits there waiting for my body to make it exit.

So like any new or change to any symptom or my health I told my GP. I guess he has a few ideas of what it could be, or things he wanted ruled out. He said he wanted me back in a few days later for blood tests, a urine sample and a stool sample. I can’t even remember everything he was testing for – there was a list.

I found the whole experience a bit traumatic. I don’t like needles so getting blood taken is never an easy task for me. However, if I go in and look away I can usually deal with it. I tend to pick a point in the opposite wall and just stare at it. I hardly even talk to the nurse through it. I need to concentrate on that point that I’ve chosen. I have done urine samples before. I hate them. I swear I need to pee so often that it’s a running joke amongst my friends that I have a tiny bladder, we all say it’s “the size of a pea”. It is my experience though, that when I need to give a urine sample, my bladder gets stage fright. It always chooses those moments to be made of steel and I have to do the full drinking loads, and have all the taps on full to get even the tiniest trickle. The problem I had was the stool sample. I have never given a stool sample before and when I was in with the GP I was too busy trying to process everything he was saying to me to ask any of my questions. Actually, I didn’t even know I had questions until I got home and was telling my papa how my appointment went.

Just a sample of questions I had (and I feel they were important questions!):

1) How do you get your sample in the pot?

2) How ‘fresh’  does it have to be?

3) How much goes into the pot? Does it have to be full? If not, how much is enough?

4) What do I do if my bowel, like my bladder, gets stage fright as I had to fast for my blood test so it wasn’t like I could just go and eat foods to help you move? (Incidentally, it did decide it wasn’t going to go. It was a nightmare. I had diarrhoea and then it decided it was not going to go).

So like any question I have, I asked my nearest and dearest and then when that failed I asked Google. So just some of the answers I got…

I asked my papa how to do a sample. I figured, he is at the age where he has to give samples for bowel screening so I thought he could maybe help. His reply first of all was to “put it in the pot”. Once I explained to him that I knew that, I meant how did I get it in the pot he said “catch it”.

Google was more helpful. Google suggested using clingfilm over the toilet to catch it and then putting it in the sample pot. I actually fully recommend this method. It works a treat!

My sisters boyfriend told me I had to “fill that pot right to the top” because “they want all the poo”. Then him and my sister laughed for ages afterwards. I decided my silver lining was that at least they were amused.

Even though Google was great for the cling film technique, one bit of advice I didn’t like was it told me that the sample should be as “fresh” as possible and if I got the sample more than 24hours before I had to hand it in then I was to put it in the fridge. PUT IT IN THE FRIDGE!! That was 100% NOT happening. I don’t care what happened but no way was I putting a pot of poo in my fridge! No thank you! I would’ve wanted to incinerate the fridge afterwards. Plus all the food stuff in there?!? Nope! Just no! I decided my plan was just to hand in my urine sample and get my bloods done and hand the stool sample in at a different time if I had to. Anything was, and is, better than even the thought of putting it in the fridge.

So I found all this a bit traumatic but my family loved it. It has provided them with so much entertainment. It is perfect material for some of their senses of humour. And I love them for it! I am worried about what might be wrong with me, what might be found, will I need more tests? But I welcome the distraction from all the laughter that my family are providing from it.

I think it is important to talk about bowel movements sometimes, especially to medical professionals if something is wrong. It is one of those things that is a bit embarrassing so you’ll maybe not bring it up with someone but you totally should! It can be an indication that something is up. But also, those medical people are human too! They poop too!

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Crohn’s and Colitis Awareness Week 2017

Friday 1st – Thursday 7th of December is Crohn’s and Colitis Awareness Week.

Check out http://www.crohnsandcolitis.org.uk for more information, tools and resources. Crohn’s and Colitis UK is a charity organisation that has been working for 35 years to provide people with help and support as they learn to live with this invisible illness. 

Be nice to one another, you never know what other people are dealing with in their lives. As you are trying to feel your way through your life, other people are trying to do the same. 

Spread awareness and help give invisible illnesses some visibility. The more people who are aware, the more understanding people who really need it can get. Hopefully, one day, a cure will be found but until then start conversations, help end stigma, help people with invisible illnesses get some understanding from society.

Self care awareness week

This past week, the 13th – 19th of October, it has been self-care awareness week. In some ways, it feels a bit redundant posting about it on its last day. However, I think it is important to raise awareness, even on the last day of national awareness raising weeks!

Self-care is about looking after yourself. It is about eating a healthy balanced diet, exercising and looking after your mental health and well being. It is about learning when, and how, you can take care of yourself, when a pharmacist could help and when to get advice from a healthcare professional. Self-care is important when you have a chronic condition, it helps to understand your condition and learn how to live with it. Being able to self-care offers empowerment and allows people to play an active part in their own health and well-being care. Self-care is not an idea that is around just for a week annually! Self-care is for every day! Self-care is for life!

The self-care forum is a good place to get support and resources to help give you ideas on how to self-care. It is particularly good as it offers material on physical health and mental health.

Self-care is easy to do, but it is easy to forget about it. I know, sounds like such a crazy statement but it is true! In today’s world it is easy to be overworked, be distracted by all the technology out there and it is so easy to grab fast food, easy to binge eat, binge drink. As well as all of that, it is so easy to isolate yourself from people, to push people you care about away, not see your friends and family. If you have a chronic condition it is easy to give in to it. My papa calls it “lying down to it”. I know the difficulties, it is all struggles I have myself. It is easy to lose yourself in all of this, to lose feeling good about yourself, to know your own worth. Small things like making sure you eat a balanced diet, drinking water throughout the day, doing activities can all help. Thirty minutes of activity a day is enough to help keep a person healthy.

Incidentally, Monday of this week (13th November) was national kindness day. Being kind is another important factor in life that should not be kept for one day a year! Kindness should be shared every day. If every person showed a little bit of kindness a day the world would be a much better place. All you need to do is look at news coverage (whatever way you do that – social media, watching the news, reading the newspapers, listening to the radio) and you can instantly see that the world would not go wrong with some kindness shared! I cannot fathom how some people think it is ok to treat people the way that so many of us are treated. On Monday I witnessed a person a bumping my car! Luckily nobody was harmed and there is little damage done, but it is stressful when things like that happen. We did everything as we should – swap details etc and we sorted everything out. The woman has thanked me for being nice about the situation. On the one hand, I fully appreciate that the woman has thanked me for being nice to her, and I do understand that situations like this are stressful and difficult but it makes me sad that she felt she needed to thank me for it. I did not react the way I did because it was national kindness day, I just treated the woman like a fellow human being! Me overacting would not have changed anything. The woman was upset and embarrassed enough that she hit my car, she did not need me making her feel any worse. Being kind increases good, positive feelings in yourself and other people.

So this past week I have increased my water intake and I have tried to be active for at least 30 minutes a day. I have tried going for walks to keep physical but also to get me out the house for a while. I like going outside and taking pictures of things I like or find interesting. They often look awful, I am definitely no photographer, but I like doing it. I got new duvvet set and my bed was changed. That feeling of getting into a fresh, clean bed is unbeatable. Another activity I have been up to this week, is I have been giving knitting a go again. I took the small amount I had kind of managed out and I started again. It is not neat but I am doing it myself and I think I know what it is I am doing now. It is just putting it into practice! I am going to keep at it this time.

After all, “practice makes perfect.” This has been difficult for me. My nana was amazing at knitting and it is something I have always wanted to do but have never been able to pick up. The last time I started this project my nana was still alive and she was just mystified at my progress.

Things were happening that I had no idea how they happened – holes were appearing, I was adding stitches, I somehow managed to take all the stitches off the needles. We laughed so hard at my attempts we cried at times. I feel like it is important for me to master knitting now though, I think it will be beneficial for my grieving process. I feel quite proud that I have been able to start again and I think I am actually getting it now. I also had a great night last night. I met my best friend and we went a walk around my local town looking at the Christmas lights. Claire went my speed, and let me use her to hold onto for support the whole time. We stopped walking whenever I had to – either because I had to, or I saw something I wanted to take a photograph of. Then we went out for dinner and bought a lot of good food. Good, warm, comfort food. We got some sides that we could share and we just chatted the whole time. We spoke about everything and it was nice. I smiled, a lot! Actually, I smiled more yesterday than I have done for a long, long time. I felt ‘normal’, which is something I haven’t felt in a while. It was a Saturday night and I

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was spending time with my best friend. I really needed it. Truthfully, I did not actually know how much I needed it until we were out.

I have included some websites at the bottom if anybody needs any random kindness ideas or self-care tips. If anything can be taken away from this post, I would say, that on your journey of feeling through this life remember:

  • Self-care is important, look after yourself – physically, mentally, emotionally and spiritually. You are awesome! You are important.
  • Take some “me time” – do something you enjoy, relax, feel good.
  • Be kind! Be kind to each other, be kind to yourself! As cliche as it sounds “share the love”.

http://kindnessuk.com/

https://www.kindness.org/

http://www.selfcareforum.org/

It’s been a while….

It has been quite a while since I last blogged. Very nearly a whole month to be exact. I have just not been able to do it. I have not been feeling very well lately, at all. If you know me, or have been reading my blog you will know that I find a lot of things difficult but I have been trying to be more positive about things. I have been trying working on my health (my physical health, mental health and emotional health) and my general wellbeing. Like everything else on my journey, I was succeeding in some aspects and not so much in others. That is until last month, when I feel like I just hit a wall.

At the end of September the pain nurse advised a change in medication as the one I was on did not seem to be doing anything for my pain, but just giving me a bunch of side effects. Some of which were very difficult for me to cope with. So I had to decrease those tablets (let’s call them Tab A) and then start taking and increasing another tablet (Tab B). I was then taken off of Tab B after a short time as I had a bad reaction to them. So I was to start again – decrease Tab B to then start and increase Tab C. However, I also had problems with Tab C as I was taken off of a tablet I have been on for over a year to go onto this new one. So while I was coming off of Tab B, and starting Tab C to then increase that dosage, I was having to decrease the pill I have been on with the aim of coming off that one. All medication has side effects so I’m sure you can imagine the effect that all these medication changes have been having on me. As well as this treatment plan I have been issued other tablets to try and help me sleep. I stopped taking them though as they made me feel worse. No lie, my bedroom shelf is starting to look like a pharmacy! My GP told me that I was going to “be in for a rough few weeks” with all these medication changes so I knew it was going to be challenging.

Even with the knowledge that the changeover of medications was going to be difficult, I still took it quite hard. I have been very cold, but then very hot, the pain has increased, the little motivation I had disappeared, my appetites changed, my skin has changed, I’ve been emotional. Most days I stay in the house, usually in my bed. I feel like I have no ability to leave it. I feel like it is too painful. I feel like I do not have the energy. It has been hurting me to colour in, which has been a go to activity for me for years. If I feel stressed or need to calm down I go to the colouring books, with my felt tips and take the time to colour in. It has been a ‘coping technique’ for me for a while now. I was starting to find it difficult as I feel my coordination has been lacking recently, but then it was still able to keep me distracted for a while. My problems now include it feeling like the pens are rubbing off my fingers and it hurts to hold the pens.

I have found it difficult to go to my yoga/pilates class and I haven’t even been going to walk through the pool. I think it is a mixture of feeling ill and having no motivation. At my last pain management physio appointment the nurse told me that she wasn’t going to be giving me another appointment at this time. She would like to give me time to try and get my medication sorted and settled before refocusing on attending my classes and doing the specific exercises that she gives me for “homework”. I’ve just to continue trying to move so that I do not stiffen up too much. Instead, I have to focus on keeping in contact with my friends and family and spend time with them when I can. She feels this will be more beneficial for me at this time. Once I am more settled then I have to phone her and make another appointment for us to set more physical goals. She also told me that I have to “stop being so hard on myself!” This is something that I have been told multiple times throughout my life. It is just very irritating feeling that you used to be able to do something, or should be able to do something and cannot now. I don’t know why but her telling me this seemed to really resonate with me. As I said, I have been told this a thousand times before. I don’t know what made that time any different? It got me thinking though. I think in some ways, on top of feeling rubbish, I am also punishing myself for not being able to do things. Which is not really fair to myself. I had been making an effort. I was having victories. I just need to take some time to feel a bit better, and hopefully get my medication and sleep sorted out and I’ll be back on track. This could be, or is, just a bump in the road on my journey. Just an obstacle to overcome.

I decided to get a flu vaccination this year too, which in hindsight was maybe not a good idea when I had so much going on in my body already. However, hopefully I will have protection from the flu! I will post more about my decision to get the flu jab another time, I think. On my last GP visit I told him that I was still feeling horrible and we spoke about some of the symptoms/side effects I have been experiencing and he checked me over. I have ‘flu like symptoms’ and he has given me anti-inflammatories to take as I have been having really bad earache and I also have tablets to take to protect my stomach lining with all these changes. My shelf is even more like a pharmacy unit! I am lucky though, throughout all this my GP has been really good and he is listening to me and he is having me in to keep uptodate, and to “keep an eye on things.” Especially while I am so run down. However, on a positive note, I had very good blood pressure! I feel this is a victory!

Things still feel very much up in the air for me. I still feel rubbish all the time but I also feel like I am being neglectful in not blogging. As well as feeling ill, I feel like the longer that I haven’t posted, the harder it is has been to get back into it. I was really hoping that once I started something would come, and it has! Another victory! I have been trying to be easier on myself, and I have been trying to do things that aren’t staying in bed all day. Try is all I can do though! Anastacia’s lyrics,

“Cause I’m sick and tired

Of always being sick and tired,”

keep going through my head. I know the song is not about being physically sick and tired but I feel the line is very apt for the way I am currently feeling! I am “sick and tired of always being sick and tired!” This post is my first step to try feeling my way through this hurdle, the first try at getting over that bump in my journey.

Walk in Water

A big part of having fibromyalgia is self care and self management. One thing I do to try and manage my symptoms is go walking through the swimming pool.

I had a limp when I walked for months. Somebody suggested to me that I should go swimming as it’s good for the joints. The problem is, I cannot swim. It’s something I always wanted to do but I have never been able to accomplish (it’s a work in progress). When I was younger I was nearly swimming but I got pulled under the water as a joke and I’ve pretty much had a fear about being in the pool since. It was then suggested to me that I should go to the pool but just go walking through it.

Now, due to the aforementioned fear, even the very thought of going to the swimming pool induced a lot of anxiety. One day I decided to go down and I walked through the pool. My biggest surprise that day was that I survived it. I could not walk very long through the pool. The fatigue hit me fast but I could get myself to the pool and out again without drowning! Since that day, I have continued going to the swimming pool at least once a week.

The water in the pool takes stress off of joints and makes it easier to walk. As well as this, the water also provides some resistance which helps make your muscles work. Water exercises are classed as low impact exercise. The movements you do in the pool does not have the same impact on the body as there would be doing it on land.

Some benefits of walking through the water include:

  • Muscle strength being improved.
  • Improved posture and balance
  • Greater movement and flexibility of joints
  • Improving general fitness levels
  • Eases stiff joints and sore muscles
  • Enhanced sense of wellbeing, better moods and hopefully better sleep.
  • Reduced pain and tiredness.

My progress is slow, very slow, but I am working on it. Like I have already mentioned, I believe it is walking through the pool that has improved my walking, however slight it may be. I have also been very lucky that I have had friends accompany me and walk through the pool with me, being my own personal cheerleaders and motivators. I still have a lot of anxiety regarding going to the pool but I am trying my best and that is all somebody can really do.

Walking through the pool is just one of the many things I have tried to self manage my fibromyalgia symptoms, just one of the activities that I am attempting in my journey of feeling through life.

“What are your hobbies? What do you enjoy doing?”

“What are your hobbies? What do you enjoy to do?” These are questions that I have been asked a lot recently. Usually by a medical professional, scribbling down some notes or filling in some sort of medical assessment. I find it a really difficult question to answer. The answer is I don’t know. I really don’t remember. From experience, I can tell you people tend to look at you strangely if you give this answer, to what they deem simple questions.

For years now I have felt like I don’t know myself anymore. Truthfully, I don’t know if I have ever properly known myself. I guess as a twenty-something year old, it is now that I begin to know myself better. There are things that I used to like doing. There are things that I used to do. I just don’t really remember, or know, what they are. It is not just my diagnosis that has made me forget what I like doing, or hobbies. I don’t remember having hobbies for a long time now. I had exams at school then I went straight to university. While I attended university I worked. After I graduated I worked extra hours, or cared for my nana or had some appointment trying to find out my diagnosis. Then when I got injured, I found myself in so much pain, and so much less mobility I now cannot do activities and tasks at all.

I am now faced with a lot of spare time, as I am currently unfit for work. I don’t know what to do with my time. The most difficult version I was asked these questions, was when I was trying to set goals with the pain management physiotherapist. This was more difficult as the questions had an extra element to them. The physio wanted to know what I liked to do that we can set goals to build up to. I do not know what I want to build up to. I don’t know what I liked to do, I did not really have ‘me time’ to do things. Now I have too much time and I don’t know what I like doing, as well as not knowing what my body will do without screaming at me.

One thing I do know I like is spending time with friends! So this weekend, Hazel and I went to Comic Con. To be able to go, I made sure I had painkillers with me and I wore heat pads to try and dull down some of the pain. I have never attended Comic Con before. I have a bit of a fear of people dressed up. Well, if I can see the person’s face I am OK…. Unless that face is painted as a clown! Then I am ALWAYS afraid! I had a lot of worries when Hazel asked me if I wanted to go with her. However, I had a great time. There was so much things to see, that I didn’t know what to look at first.

Now, I am not saying that going to Comic Con is a ‘hobby’ I have. I did enjoy myself that day though, and it is something that I would attend again! Trying new things can be a great time. Exploring new activities means that you might find something you enjoy doing, or find new hobbies. Even if you know how you like to spend your time, finding new activities contribute to your growth and development.

Right now, I am telling myself that it is ok that I do not know what I like to do. It means that I can, hopefully, have fun as I explore options and find out, while getting to know myself. I am still fairly young, it is ok not to know myself completely. Everybody is just trying to feel their way through life anyway – I am no different.

Lady Gaga announced she has fibromyalgia…

Lady Gaga has a documentary coming out on Netflix this month which features her battle with chronic illness. This week she announced that she has fibromyalgia.

When I hear of anybody with fibromyalgia, I feel for them. As somebody who experiences the pain and hardships on a daily basis I can empathise how bad their battles may be. Fibromyalgia can affect everybody differently, and can affect your life differently from a day to day basis. This makes it hard to treat, hard to manage.

I am interested in watching the documentary being released later this month. I think it will be interesting to see how fibromyalgia is portrayed on the film. I recently watched a television programme that had fibromyalgia featured and I do not think it was featured well. It started off well but did not show the multiple battles, or different treatment types that may work. It made treatment seem like a “one size fits all” idea, and that is definitely not the case. It would be great if there was a treatment out there that would definitely work for everybody however that is not the case.

Lady Gaga works hard for her performances. She does a lot of singing and dancing. I worry that people will see that she has fibromyalgia and still performs so could potentially alienate people who suffer from it. I know for a fact that there is no way that I could put on a show like Lady Gaga! I can’t even go shopping for twenty minutes without crying. I can’t even shower without having a lie down afterwards. Already, I get told things like ‘[insert name here] has fibromyalgia and they can [insert activity here].’ I can already hear Lady Gaga being used as a potential example – “Lady Gaga has fibromyalgia and she can still work/perform.” It can be hard for people to see how debilitating fibromyalgia can be, especially when it is an invisible illness. Also, Lady Gaga will have access to different, and potentially more, treatments to try.

That being said, a famous person speaking out about fibromyalgia will definitely spread awareness. Her announcement has started so many conversations and that is very important. It has put fibromyalgia in the spotlight and shared information about it to people who may not have heard of it. For some people, it has brought about hope. It is a reminder that they are not alone in their battles.

Fibromyalgia does not discriminate, it affects people from all walks of life.