Christmas with Endo – Survived!

“Will I survive Christmas, will I spend it in bed or will I spend it with my family this year?” 

When you have a chronic illness such as Endometriosis, these are the kind of questions that you ask yourself. However, you can ask these kind of questions as much as you like; the main issue here is you have absolutely no control of when Endometriosis flares up or any chronic illness. This can quite often lead to being unable to plan anything or abandoning plans so you can spend the day in bed with your hot water bottle. Not because you’re being lazy, but because you’re in pain and need to rest. 

After having a flare up last week, resulting in me having to take the week off work to recover and give myself some self-care…. You can imagine that I was pretty petrified about still being in that flare up or simply having another one. Not only can we choose when it flares up, but we have no control of the length of each flare up. Furthermore, I also remember having a flare up last year on Boxing Day and spending majority of my day in bed. Being at my boyfriend’s house last year for Christmas, I felt like I was being unsociable and rude so tried to go downstairs and socialise as much as possible. Although, I knew that my body was telling me to rest. 

Overall this Christmas though, (after many prayers and hot water bottles), I have felt pain but it has not been to the extent of being bedbound which I am so grateful for. I have had an amazing Christmas spent with my family and friends even if it meant using so many hot water bottles that one somehow split in half and the heavens opened with hot water. Fortunately, I wasn’t too burnt after this event! Throughout Christmas, I have managed to: Attend Church, Spend time with my family, play games, eat Turkey and even found energy to go for a walk through 4 fields! Oh and of course…. I have eaten cheese and biscuits (Not recommended for people with Endometriosis), but hey-ho Christmas only comes every 365 days. Christ’s birth is worth all the cheese 😉 

I am so blessed to have not spent my Christmas in bed, although I am sure I will compensate for this at some point!! But I survived this Christmas for now and that’s all that matters. It’s the little things bless me so much with this illness! 

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Enjoying a drink in celebration of not having a flare up this Christmas!

Hope everyone has had a lovely Christmas and has a happy 2019!

Lots of love,

Tamsin x

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Looking at the positives with Endometriosis💪

Hello everyone,

Currently at home with a flare up and I am aware that I haven’t posted in a while so I thought it would be beneficial to highlight some of the positives of living with this illness because quite often the negativity can weigh us down. In the time that I last posted, I have managed to conquer my university degree whilst I continued to battle ferociously  with this illness known as endometriosis. Not only have I just completed my university degree but in July of this year, I had my 2nd laproskey operation for my endometriosis because during my final year of university, the hospital seemed to be my second home. Furthermore, since then I have managed to get a full-time job.

The reason I have decided to talk about completing university with this illness is because it’s not just my personal achievement; I want it to become other’s personal achievement too. When you have any chronic illness such as endometriosis, it’s such a challenge not to be defeated and just taking each day as it comes. One reason for this was because from one day to the next, I didn’t know how I was going to be. Some days I had to just drop everything and prioritise myself and my health. Some days I simply had to rest more than other days. Therefore, a positive skill acquired from my degree and this illness is that it has made me become more organised as I always had to start my work early to ensure it was of good quality and meet the deadlines. This positive attribute that my illness has given me at  university has become something that I have adopted into my working and everyday life.

Another achievement this year is undertaking a full-time job working with young adults who have special educational needs. Some students have multiple and profound disabilities and others have autism. It’s so rewarding to work with the students and I adore being able to go to work everyday knowing i have made a difference to others lives who are less advantaged than us. I find that I can connect with the students because although my disability isn’t visible, I know how it feels to struggle and to be perceived as ‘different’ in society just because you can’t always do what others may be able to do. In an endometriosis scenario, it would be that we can’t always do what we want or be social because of the pain and exhaustion that the condition brings. Some students are non-verbal and I can understand their frustration when they are trying to tell us something but can’t because they are non-verbal and therefore we don’t always understand them. Although i can talk with this illness, not everybidy understands what it’s like to be in pain everyday. This can then lead to anxiety and depression. If anything difference should be celebrated because actually doesn’t matter whether you have a disability or not, we are all talented at something and unique in our own way! During my first full term of doing this job with my illness, if anything, I think I have become more caring because i know how it feels to suffer and fight through every day without having the social models of society taking away from the celebration of disability!

At this moment, the things I find difficult is being off work and not having people understand that I am not being lazy and I don’t enjoy being absent from work. It brings loneliness when I cannot get out so that’s why I try to reach out to people on social media because I want people to try and understand just what I am going through and may be even relate to me, i do not do this to grab attention. If anything at the moment, I am trying to raise more awareness of this illness.  If i can achieve anything at the moment, it’s getting from my bed to the sofa and that is simply enough for now each day! I have to remind myself that I am doing what’s best for me and so far I have achieved more than I ever thought I would with this chronic illness!

Here is my mum and I at my graduation. I know I couldn’t have carried on without her so I am thankful!

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My Mum and I at graduation. So thankful for her!

I am now booked in to see an endometriosis specialist as the last 2 operations have been unsuccessful!

Anyway, keep going all of you and have a lovely Christmas x

Tamsin x

And another fabulous trip to hospital….

20171129_031629So here i am resting up after another trip to hospital… when will this ever end? It feels like I am going around in a complete and utter fish bowl, gawking through the bowl to seek answers.

Here is what happened. A few days before Tuesday I was feeling nauseous and faint but I did not realise it would lead to more. On Tuesday night, I suddenly became really poorly, my appetite failed and it felt like I was being stabbed at the bottom of my abdomen. Imagine that…? Well yes I thought I was on the verge of either collapsing or dying through pain (an no that is not an exaggeration). We came  back from CU  (Christian union) and I could not move from the sofa because of the pain so my boyfriend got me changed and  helped me into bed. At this point, as disgusting as it seems, I was peeing blood and felt like I could not move from the loo! I was hyperventilating at the pain and nearly fainted trying to get back to my bed. My poor bed was having it hard too because I was shaking like a leaf. It was then that my boyfriend was on the phone to 111 who then sent out an ambulance. Once the ambulance came, they had decided that I had no choice to go to hospital so off I went on the ambulance. It was no turning back after that, I was stuck in there for 2 whole days.
I was living on little sleep and my tolerance was very low. For those who know me, I am a patient person but I was certainly not in this situation.

I spent the whole of this night in the emergency department then transferred to the gynaecology ward at 6am. It was when a swab was stuck up me down below that I realised just how poorly I was, I screeched with pain and she had to stop and she hadn’t pushed the swab in that far! I had pains going up my pelvis and everything just hurt. The same happened again when I went for my scan but I managed to keep calm enough for the nurse to carry out her scan.

The scans showed nothing, ironically the same as last time. Last time they did an operation though and found cysts. Therefore, I contemplating whether it’s cysts again!  It’s sods law really when it comes to scans for me. I was really wishing they had found something so that they could help but no… I am now home in the same amount of pain that I went in to hospital with and bleeding like an overflowing tap. It’s crazy – I just want to be better!

With no further answers, I am having to start making life changing decisions unfortunately. But through it all, God is with me and he is good. He is so good that he keeps providing me everytime with a room of my own so I can get the rest that I need.  He has provided me with so many beautiful souls who take care of me and souls who were there straight away when they knew I was in hospital.  Special thanks goes to – Mum, Dad, Ben (my boyfriend), Zoe, Naomi and Michelle for visiting me. I am very fortunate to have you all in my life! Even though I am sick, I can still tell people I am blessed even when I have a tear coming from my eye. When I go to hospital, I realise that there are always people who are more sick than me and I am fortunate for that so I pray that other peoples health will be restored. I may not be the same person as I once was but it has made me one heck of a stronger and every time I get ill,  that’s when a little bit of strength is added to me. God adds strength to my weakness and I find that so encouraging to be able to keep going!

And he said to me, “My Grace is sufficient for you, for my power is made perfect in weakness.”
Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.
That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

2 Cornithians 12 vs 9-10
Amen!

Anyway that’s it for now, sorry I have not been on here much… I have quite a busy life when I am not on a hospital bed!!!

Love and light!

Tamsin  x x x

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Getting discharged from hospital!

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A busy summer!

Hello everyone!

How are you all doing? I hope you aren’t being affected by endometriosis too much and enjoying your summers!

Sorry I have not written on here for so long, my summer has been jammed packed and busier than I expected. During this summer, I have been working full-time, camping, been on holiday to Portugal and sometimes spending time with friends and family, my cat and my boyfriend. I haven’t had much time to relax and unwind from my tricky year at university unfortunately!

Before this summer started though, once I knew I had been successful in getting a job, I anticipated it being a busy summer so one of the first things I did was,pray. I prayed that God would get me through my working days and that I would feel able to do physical work like I used to be able to do. Throughout the time I have worked over the summer, I have only had 2 days off with my endometriosis which I am very thankful and blessed about. Although, even those 2 days I had off, made me feel like a failure. However, it gave me strength to realise that this is a condition and although it’s invisible it does exist and yes, it is okay to stop and rest when you aren’t well with it. It is a valid reason! If the employer doesn’t like it then it’s tough, your health comes before anything.

Throughout the summer also, on and off, I have been camping. Being a Christian, I camped at Creation Fest and Big Church Day Out. Unfortunately, both times that I went, I had bad flare ups of endometriosis and had to sleep quite a bit but I was determined not to let it ruin my experience. An unforgettable thing happened to me at Church Day out, I went to go and fill my hot water bottle up in the team tent and the lady was asking me “Are you going back to bed?”…. I didn’t know how to answer her and just responded saying, “Yes I am”. I think she thought I was a bit nuts,but that day and at that persist moment, I couldn’t care less. The pain was stabbing and I felt like all my insides were being eaten by a shark. Some people obviously think that hot water bottles are just to go to bed with, but not with endometriosis, mine goes everywhere with me pretty much!

Also an unforgettable experience was Portugal, I had hardly any sleep due to my parents snoring louder than flying pigs do! Therefore, I had ordinary tiredness plus the fatigue which I always get from endometriosis. Then one day I went to a water park and I got back, had a load of pain and all this spotting but it didn’t progress into anything more until we were home fortunately!

A bible verse which has really helped me to get through this busy hectic summer is,

“Fear not, for I am with you; Be not dismayed, for I am your God. I will strengthen you, Yes, I will help you, I will uphold you with my righteous right hand.” – Isaiah 41:10

When I have had a challenging day at work and I have felt unable to keep going because of my endometriosis, I have applied this and it has kept me going. In a couple of weeks, I head back to university for my final year and to do a dissertation, I am going to try and apply this verse again. So blessed for the peacefulness in amongst the chaos and hectic summer. Hope you have all been blessed by something this summer and not letting your endometriosis take over. I am constantly trying to be in control of it so it doesn’t stop me from doing what I want and being who I really am!

Anyway that’s it from me for now, keep in touch and take care,

Tamsin

P.s. Attached is a picture of one of my favourite places in Cornwall named ‘St Ives’, I love relaxing days out there!

 

 

Those days where energy just doesn’t exist ..

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This week has been one of those weeks where I have been so energy-less and have had no motivation, physically or mentally. A really good example of explaining how I have felt this week and ironically it actually happened to me, its like when you get  new shoes and they rub your feet. You think that once you have worn in the shoes it will wear off  and they will stop rubbing but with Endometriosis, it’s not quite like that. It’s just constant and pure exhaustion, that goes on and on!

Exhaustion is making me feel like giving up on everything, e.g university work, my job, relationships… but I read the bible and it tells me that, Jesus said, “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest.” – Matthew 11:28. All week, I have been in the midst of applying this verse to my life and trying to see peace amongst the chaos. Although exhausted, this verse makes me realise I can place my burdens on the Lord and he will carry them and he will carry me through. That’s why he died for us so that we could be set free from all our fears, battles and troubles. Every day I still believe I can be healed and believe the same for everyone else.

Throughout the week, people have been telling me that I need to rest but in all fairness, it feels so impossible when we are so caught up in all life’s events. Therefore, the question is, how can we get a balance of rest and doing? As a result of me questioning and wanting to take action, I am intending to start up a diary and ensuring that I keep at least a day to rest. This is going to be very challenging for me as I always like to be on the go and hate those days where my endometriosis is so bad that all I can do is sleep. I need to reassure myself that its okay to stop serving sometimes and let others do it instead.   At the moment, I do not feel like I am having enough rest which is why I am feeling so mentally and physically exhausted. I feel the main issue with endometriosis is that you can get 12 hours sleep and wake up still feeling knackered still. Therefore, I feel like it’s important to rest but at the same time, still keep active when you can. Its a no win game really…but hey that’s all in this life we have and we have to somehow deal with it!

Sorry that this is a bit of a depressing and morbid post but sometimes its nice to let out how you feel! Hope you are all keeping strong and haven’t felt as exhausted as me this week!

Hope you enjoyed the read and enjoy the weekend!

Tamsin xo

 

A day of positivity..

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Today, I went to placement. I was debating whether to go this morning as my legs were aching and I had a stabbing pain in my back. All because of Endometriosis on a flare up, I reckon. In the end though, I decided to go because I know that working with the special needs always brightens my day and leaves my heart overflowing with joy.

Once I arrived at placement, I found out we were going to a place called St Ives. I was really concerned that we were going to be walking miles and I didn’t feel in a fit state to do that today! It was a bit of adventure on the minibus, but that’s what life should be like. We got to St Ives and it really wasn’t as horrendous as I thought. Just hearing the waves crash against the shore, the wind howl against my ears, although completely windswept,  it soothed my mind and turned all negative thoughts into something positive. There was not a soul in sight, just us from placement, making it entirely peaceful.

Based on my reflections of the day, there was something that really stood out for me and inspired me. At placement, there’s a blind student, we had only been outside for about 10 minutes and he decided that he couldn’t stand no more of the bitter cold air and the walking so he decided to turn back. Half hour passed and before we knew it, he was coming back to join us on our walk. What really inspired me was that he was able to carry on and the fact he’s blind was not going to prevent him from doing and being part of the walk. My heart suddenly shuddered as I thought to myself, ‘what a good lad for not being defeated and carrying on like a true soldier’. It made me think, I couldn’t imagine being blind, not being able to see anything of the world, I just can’t stop thinking about how isolating that must be! I feel like as Endo Warriors we should be strong, because although we are constantly in pain, we still can see the beauty of the world. It showed me that although my legs were heavy and my back was stabbing, I was going to persevere, just like he was doing!

It made me stop and realise that really this life isn’t that bad and there are always people who have worst. So smile, reflect and be strong because if he could still carry on today then so can we. There’s nothing stopping us! Remind yourself everyday that there’s nothing to stop you from being who you want to be, always keep persevering!

Hope you enjoyed the read! Just viewed today as a rather interesting and vibrant day 😊

Tamsin x x x

Days of many emotions…

Does anyone get those days where they just feel so drained of energy from pain with Endometriosis that they lose energy mentally? Well that’s me today, completely drained.

The slightest things really wind me and make me grouchy. But do you know what, I have come to understanding, that’s it’s okay to not be okay some days. At the end of the day, we are all humans and there is only so much we can take and do.  An example of this is, if you hold emotions in… Take a cup, fill it with water and if we keep filling it up it overflows. This is just like reality. We are not created perfect, but we are all special in our own way. And,although we don’t see that at times,there is a God who still loves no matter what. The reason why we were given this condition was because God knew we’re strong enough to fight the toughest of battles.

There are other days, where my heart overflows with joy and even though I am in pain, I only see the goodness and beauty of the world. This is completely a different outlook to the day I have had today..  I did not see beauty in the world when I got pooped on by a bird. But, however I will still choose to admire nature and the world in the foreseeable future!

This is a quick read but I just wanted to put the message across… that it’s okay not to be okay but it means having time to think and rest.  I am currently not okay but I know that there are better days are ahead, I will not let Endometriosis beat me! Keep Strong all of you are suffering!

Lots of love x x x

 

Does anyone get those questions with Endo that they just don’t know how to answer?

Okay so since I have had this condition, I don’t know about you guys, but there are always questions which I don’t know how to answer.. And one of them being, “Are you feeling better now”…  I love when people ask this because it suggests that people really do care about me and my wellbeing which does make me feel lovely. It’s not really a question that annoys me as such. However, I never really know how to answer it because there’s never a day where I am pain free or not fatigued from the condition. I have good and bad days with it and I can never tell how I am going to be. I think in this matter of the question, it’s about being strong and saying “Yes I’m not too bad thanks, but just taking one day at a time!”,  even though you know you will never feel 100%. Remaining positive to people is key as there are people in the world who have worst things happen to them such as cancer or losing a parent etc. That must be so hard, I am not sure I’d be strong enough to handle something like that but I guess when you have no choice but to be strong then that’s what you do and enjoy the little things more. We are still living and will continue to fight strongly!

Secondly, a question that really riles me the most is when you have an Endo belly and people ask you, “When’s it due”. There is nothing more frustrating and infuriating! This has happened to me before and I haven’t known where to look and think to myself, do I just say… “It’s a food baby?!?!” or do I just tell the truth and say “No I am not pregnant. It’s actually called an ‘Endo belly’. As annoying as it is at the time, I think it’s paramount to see past this and think positively that as Endo Warriors, we are made to be like this and that it’s not fat but a part of our identity and who we are. Although, saying that, you should never let Endometriosis define who you are! But remember it’s is important at the same time to watch our diets so avoiding eating gluten and dairy plays an essential part in not bloating and having what is known as an Endo belly!

The last question that really frustrates me occasionally is: “Will a hysterectomy help it?” As much as I’d do anything to kill the pain and have thought about having a hysterectomy…I am 20 and would still like to try and have the chance to have children. Not only that, but hysterectomies do not always get rid of the pain anyway, I have heard of people having hysterectomies and the pain is still there. As much as it infuriates me, I always put a smirk on my face and say to others that “One day I am not going to let Endo beat me, I am going to have a family, no matter how long it takes or how many treatments I have to go through so hysterectomies are just a no no,no win game!

Keep positive! Hope you enjoyed the read! 📖 😊

Tamsin xox

What a academic year it has been but look who survived and now feels like a WINNER!

Throughout this whole entire academic year, it has not been easy. Currently, just finishing year 2 of university and there have been many times when I thought I should just give up and let my endometriosis take control of my life. Here’s to the wonderful story which changed my life…

So we went back to university at the end of  September, I was very low on energy all the time and no matter how hard I tried, I just couldn’t seem to get my head down and begin any essays. At the time, I just thought hey hum, I am probably like this just because we have had a long summer break and just not used to this workload after having a relaxing summer. During this time, I was getting really bad stomach pains and I couldn’t really understand why. Eventually, one day in October, the pains got so bad that I had to do something about it and take myself to A&E. Once I got to A&E, it was a bit of a waiting game but they did some tests on me and couldn’t find anything. Within half an hour, they told me they thought I had appendicitis and admitted me to hospital. Before I knew it, I was as high as a kite on morphine, didn’t really know what was happening.

The next day, all the doctors were still thinking that it was appendicitis except from one doctor who said he thought it was something else causing me all this pain. So then I had to go for scans and nothing showed on the scan.  I went back to bed and within 10 minutes, a doctor came and spoke to me explaining that I was going to have to be put under anaesthetic to have a laproskey operation carried out to find out what was going on. I got told they wanted me down in the operating theatre as soon as and operations were being cancelled for me to have mine.  As I was being told this, I felt my heart sink because I knew it was something serious as why would they want me down there so fast as this. There was no option but to have the operation done. I clutched my mum’s hand who was beside my bedside and prayed. Then headed down to theatre.

Once I came around from anaesthetic, I had never felt pain like it and was very confused. Doctors told my mum and dad that it was just some cysts I had and some that had burst which was causing me all the pain. I could not walk for days and was bedbound in hospital then eventually got dismissed. Never really thought much about it after that… until  a couple weeks down the line, when the same thing happened again, same pains, same tiredness. So back down to A&E I went, where they explained to me that when they operated on me, they actually established I have a condition called ‘Endometriosis’ and its where the endometrium grows outside your womb so you get pain in different parts of the body. It gets worse when we have periods as we are internally bleeding and all those parts with endometriosis become inflamed and also bleed. Before I was diagnosed, I always had quite heavy and painful periods but just thought that was normal. On the first day its normal to get some pain but not deliberating pain throughout the whole thing. It feels like having 101 beestings and every time you move the pain just triples.  1 in 10 women have this awful disease. The hardest thing for me to comprehend was when the doctors told me how I may never be able to have children as I know how special children are and especially when you are carrying. Just to know I may never get that feeling, it hurts. Not only that, but being an only child and having to try and have my parents they may never have grandparents. I felt my heart break into a 101 pieces and felt so hopeless. But God is on that, its all in his hands!

Even though I was chronically ill, I still had to attempt to carry on with my university course. Everyday I have been in pain, no day has been easy.  The goal to finish this academic year seemed so far away, even last week when I was having a bad endometriosis flare up, the goal seemed so far away to finishing. Every day I have been using 2 bible verses to get me through and these are:

Come to me, all you who are weary and burdened, and I will give you rest.” – Matthew 11:28.

I  can do all things through Christ who gives me strength. Philippians 4:13

As of today though, I am relieved to say that I have just completed my 2nd of university, my essays are all complete and no extenuating circumstances have been applied for. My heart feels so overwhelmed with joy as I have achieved something I thought I wouldn’t. I never thought I’d still be at university but just taking one day at a time and following Jesus I am here. People have been so supportive which has helped also. I feel like a WINNER!!

A massive shout-out goes to my Grandma as she is my greatest inspiration as she has a lot of autoimmune diseases from a young age but yet has still carried on battling like a true soldier.  I have never understood how she has coped but she has always told me that, “When strong is the only thing you can be then that’s all you can do in this life!”

That has always stuck by me and it reflects on how I keep going everyday!

Just remember that nothing is given to you that you can’t handle. And no goal is too far away, just breathe and embrace each goal! Keep going and keep strong!

Hope you enjoyed the read,

Tamsin xox