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What does suicide mean to me?

This week my husband and I have found ourselves greatly affected by the death of Caroline Flack as I’m sure many of you have been. A sad loss of a beautiful life. No matter what was going on in her personal life, she did not deserve this. We can try and apportion blame to the press, social media, the CPS but at the end of it all lies a bare fact that Caroline was in so much emotional pain that she couldn’t continue in this world. 


I have felt suicidal twice in my life, most recently 16 months ago. I talk about it here, not for attention or sympathy but to break down the taboo that surrounds suicide in the hope that it may help others feeling this way to open up and tell someone.

Feeling suicidal is complex, it doesn’t happen over night. For me, it had built up over a number of weeks and months of tough, complex situations (see my previous post called mental health, infertility and me). I didn’t just wake up one day and feel suicidal, I had been struggling for a long time and my depression was relentless. The pressure got too much. I didn’t want to die but I couldn’t cope with this level of mental and emotional anguish any longer. I just wanted the pain to stop. I woke up in the early hours one morning and the word suicide kept going round and round in my head, torturing my every thought. I wanted to make a plan, I wanted to find a way out, I was terrified. I wanted to go online to find out how I could do it. I wanted to cause myself harm. I didn’t tell anyone, my messed up mind was telling me not to, because once I told someone, they would stop me. I couldn’t go back to sleep so I just lie there, full of fear, pain and anguish. I didn’t want to do it, I didn’t want to leave my husband, my friends, my family, but I didn’t want to be in this pain any longer. 


The following day I broke down and confessed all to my husband. To see the pain and hurt in his eyes was too hard to bear, but it saved me. We had crisis talks with my parents and made a plan to visit the GP the next morning. Before we made it to the appointment, I tried to cut myself in the shower with my razor blade. I needed a release for all the emotional pain I was feeling. I needed the pain inside me to be visible to the outside world. It didn’t work, it was too blunt but the mark from the pressure I applied stayed with me as a stark reminder.


My GP was compassionate, kind, understanding and didn’t belittle my feelings. We changed my antidepressant and she considered whether I was safe to stay in the community and whether I needed to engage with the Crisis team. She was reassured that because I hadn’t actually made a plan, I’d stopped myself, the close support and supervision of my husband and parents was enough. Those next few weeks were the hardest of my life and my thoughts constantly turned from suicide to self harm and back again. The dark thoughts had completely taken over my mind, my head, everything. It was tortuous and my mind was playing the cruelest tricks on me. I was on constant suicide and self harm watch. My GP told my husband to hide all of the knives, scissors, tweezers, medication, painkillers in my house and that I was not to be left alone at all. My husband and parents were with me continually in shifts over those next 2 months until I felt safe to be on my own again. The scary thing was, I did not trust myself to be on my own. I was afraid, so very afraid of what I might do. There was something stopping me from harming myself and that strength I found from deep down within, is the strength that saved me. What is the difference between someone who crosses that line like poor Caroline and someone who doesn’t? Personally, I think after experiencing the severe pain of depression myself that Caroline’s pain became too much to bear and she literally did not have the energy or will left to dig deep and find anymore strength to fight it.

Gradually in time, those feelings did pass, the new antidepressant kicked in, which suited me better and I started feeling a bit more like myself again. Recovery is not quick, it isn’t easy but it is most definitely possible. 16 months on, I am back at work part time, I’ve had some counselling and I am beginning to look forward again.

The message I want to send to anyone who is reading this and is feeling the way I felt, recovery is most definitely possible. These feelings are not you, they are the depression. They will pass, if you can just keep going, dig deep and find your strength. Please please tell someone, I can not emphasize the importance of this enough. Tell a friend, a family member, your GP, your neighbour, your work colleague, the person you sit next to on the bus to work everyday. If you can’t face telling someone you know, talk to the Samaritans. Call them on 116 123. Do it now, right now. Please. Do it for me. Do it for Caroline, do it for your family, your friends, your loved ones, your children, your fur babies but most of all, do it for yourself. You are important.

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Mental health, Infertility and Me.

I am no stranger to mental health problems. I have had depression with anxiety on and off for 13 years and I write this post with the hope of highlighting the often unspoken mental health problems that can accompany Infertility. It wasn’t easy to write and I debated with myself about its appropriateness for several days before making it public. But what could be more appropriate than the truth. I am not trying to seek attention or sympathy from my audience, if I can encourage just one person to feel less alone and to speak out and seek help then I have suceeded. This post is REAL and comes with trigger warnings regarding suicidal thoughts and self harm. Although some of it maybe hard hitting, it happened to me. I am still here, coming out the other side. And so can you.

My first bout of clinical depression was triggered by a long term (6 year) relationship ending when I was 25. It was very sudden, without any warning and under circumstances completely beyond my control. I struggled to come to terms with the feelings of abandonment, humiliation, betrayal, fear and shock. This lack of control has remained a trigger for me throughout my mental health journey. I moved back in with my parents because I needed to be looked after during what I now view as a complete breakdown. My Dad and I used to run together locally and on a day when I was feeling particularly low, I broke down on one of our runs. There was a lorry coming towards us and an overwhelming desire came over me to jump out in front of the lorry. I just didn’t want to feel the unrelenting internal pain of depression anymore, I wanted to feel physical pain, to make it a reality and for everyone to see the pain I was feeling inside. It was then that I realised I needed help. I confessed all to my Dad on a teary walk home and my parents ensured that I got to the GP to get some help via antidepressants and CBT. To cut an incredibly long and painful story short it took me 2 long years to get my life back together to a point where I could work and start enjoying life again. I worked out ways to manage and live with my depression and anxiety and other than a few short term relapses, I coped. Exercise was a big factor in my recovery alongside the amazing support of my parents. I took part in a charity trek to Peru for The Mental Health Foundation, which gave me a goal to work towards. The depression was always there though, snapping at my heels, waiting for me to succumb. I tried to keep my life as stress free as possible and although this was never easy for me, it certainly helped to keep my mental health in check and give me back that vital sense of control.

Eventually, I started dating and met my wonderful now husband, Wayne. We had an amazing, fun time together dating over several months before moving in together a year later. I was open about my health problems and he was always very supportive and great at keeping me calm. He is very relaxed and chilled out and I liked that a bit of that rubbed off on me. These were some of the happiest months I can recall before my chronic health problems began leaving me bedbound for almost a year. Although I obviously felt low during this period, I managed to stay afloat and not sink into the deep depths of depression again. At the end of that year, we took a family holiday to Turkey and it was then that Wayne proposed on the beach, early in the morning. We couldn’t have been happier and despite my illness he still wanted to marry me, warts and all! His patience throughout everything we have endured really is a blessing.

We started trying to conceive (TTC) a year after we married and followed all the usual tips of working out ovulation dates, fertile periods and going for it (!) but nothing happened except the continual heartbreaking disappointment of seeing negative pregnancy tests month after month. My GP referred us to see a Fertility specialist and after several tests, scans and precious time passing we were told we would need IVF to conceive. This was obviously a shock and we took time to process this and see my chronic illness specialists to ask their opinions on the effects it would have on my health before deciding to go ahead with IVF a year later. The form filling, pre IVF testing and letters from my chronic illness specialists all took time and before we knew it 3 years had passed since we started TTC. Any IVFers out there will know that waiting is a skill you will learn during this process, although not necessarily patiently! I gradually came off the medications that were unsafe in pregnancy as recommended by my doctor including my antidepressants because I wanted to give my eggs as much chance as possible to be healthy.

Finally by January 2018, we were ready to start. I remember being so full of hope over the Christmas period, we were delighted that we were being given the opportunity to have a baby of our own and we talked about how it could be the last Christmas together without having a child and how different it would be in years to come. As much as we told ourselves not to get too hopeful, it is impossible not to imagine the life that you so desperately dream of lying ahead of you. We were excited about our first round and couldn’t wait to get started. The injections, raging hormones, ultrasound scans, follicle counts and the continual building of our hopes and dreams ensued. We were firmly in the ‘Hope Zone’! Egg collection came and we retrieved 4 eggs but of those 4 only 1 made it to a day 3 transfer. We were devastated we had no embryos to freeze to give us more chances and all our hopes were placed on the little embryo inside me. The emotional rollercoaster of the Two Week Wait (TWW) was extremely tough. I googled every tiny little cramp, twinge, ear twitch or leg cramp on a daily, sometimes hourly basis to see if it was a pregnancy symptom but the cruel truth is the progesterone suppositories imitate pregnancy, so I was experiencing all the symptoms of pregnancy without knowing if I was pregnant. A complete mindf***k! Staying sane during this time is pretty tricky stuff, even without mental health problems. We were beyond devastated to receive a negative pregnancy test at the end of the 2 weeks. Without any bleeding we thought it maybe positive but the pesky progesterone was doing its job of keeping my lining intact for the embryo to snuggle into and as soon as I stopped it, I bled. We grieved for our lost embryos, our hopes and dreams of our child in our minds and our one shot this cycle being over. We now knew what ‘trying again’ meant. We cried and cried and cried until there were no tears left. It honestly felt like someone had died. We were reassured by our consultant this reaction was normal and that ‘it seldom works first time.’ We had our follow up appointment with the clinic where we swiftly returned to the ‘Hope Zone’ after being reassured with a new protocol and different drugs to try. This time it was going to work! We took a break for 3 months, we went on holiday to Turkey and took time to process everything and look forward. We were ok, we had another chance and we chose to start our second round in July.

Looking back, maybe there were warning signs I ignored or didn’t listen to or maybe I wasn’t even aware that were happening at the time. I was on a merry-go-round and I kept going because I was so desperate for a child of our own. I wasn’t sleeping well, I was getting 4-5 hours a night and I used adrenaline to push through but with chronic illness and depression, that eventually comes with a price. Interestingly, on our holiday week in Turkey when I finally relaxed I slept like a log all week but as soon as we were back in the UK, the insomnia returned.

Nevertheless, we pursued with round 2 in July. I felt differently this time, I had lost that nervous, naive excitement of the first round and it was replaced with an urge to get it over with and know the outcome. Everything felt like a chore, the injections, the scans, the continual waiting, the travelling to appointments. But I wanted our baby so desperately and if that is what I had to do to get it, then so be it. Egg collection felt more stressful this time. I woke up in theatre and heard the doctor say ‘stop the bleeding’ and the anaesthetist quickly placed the mask back on my face. When I came round I burst into tears, I remembered waking and feeling quite traumatised but I was reassured it was only a minor bleed and we had 5 eggs – one more than last time. 4 eggs fertilised over night and we were told to prepare for a day 5 embryo transfer with hopefully our chance to get some embryos in the freezer. However on day 2 we got the call to say only 2 of our embryos had survived the night and to get to the clinic ASAP for a transfer. We had been cocky, we were not ready, we were in bed having a well deserved lie in. We had a massive rush to get ready and again the adrenaline surged to push us through. We got showered, drove an hour and a half to the clinic and stopped at my acupuncturist en route. Luckily, we made it to the clinic by the skin of our teeth and we had both embryos put back followed by a post transfer acupuncture session and an hour an a half trip home, carrying our precious embryo cargo before we crashed out on the sofa. We had done it, we had 2 embryos safely back inside and this time it was going to work! Knowing we had 2 on board increased our chances and we even casually entertained the idea of twins. We were firmly back in the ‘Hope Zone’.

Our second TWW was filled with exhaustion for me and I was off sick from work. I had crashed, my chronic illnesses had relapsed and I couldn’t function. This TWW felt longer, I was at home, without distractions, counting the hours until test day, accompanied by the unrelenting rollercoaster of emotions and anxiety. One minute I thought it had worked, the next I hadn’t. Part of me wanted to test early so I could just know and put an end to it all, but the other part didn’t because I wanted to remain in the ‘Hope Zone’ for as long as possible. The small possibility of being pregnant was better than knowing I wasn’t. When test day eventually came, I didn’t want to test, I knew all too well what could be coming. We were devastated again to learn of our negative. All those hopes, dreams, plans, weeks of preparations, injections and scans smashed to the ground in two lousy minutes. It really did feel like the end of the world. The grief poured from us again, but this time it felt different. Initially, my reaction was ‘I want to go again, do another round’, I was so desperate for a child, life didn’t seem possible without trying again. After a few more grief filled days, we started to wonder if we could actually go through this pain all over again.

By this time my crash had completely taken over, my body was unhappy, my mind was unhappy, I was in turmoil. My GP signed me off again due to my chronic illness flare up and 2 weeks turned to a month. The next time I called, I spoke to a different GP who suggested that my mental health problems could be involved in my crash, lack of energy, hopelessness and complete exhaustion. Once the penny dropped it now seemed obvious, the lack of control I felt over our situation had tipped me over the edge and the depression was back. I was heavy, it was an effort to lift a limb and took so much energy to complete the smallest of tasks such as brushing my teeth. Taking a shower seemed a huge mountain to climb, even talking was hard. Alongside this I became numb, almost devoid of feelings altogether, I felt nothing, except emptiness, hollow and incapable of thought. I stayed in bed and stared blankly into space. I just didn’t want to do anything, I couldn’t do anything, the hopelessness overwhelmed me. The tears had stopped, I wasn’t even capable of crying anymore. My body had shut itself down as a form of self protection. The horror of depression was back.

My GP prescribed me a different antidepressant that was safer in pregnancy, so that I could remain on it if we were to undertake anymore IVF in the future, which made perfect sense. Little did I know at this point that things were about to get a whole lot worse. After a couple of weeks on the new medication I didn’t feel much better so my dose was increased. A couple more weeks after that I hit an all time low that I never thought possible. I woke in the night to thoughts of suicide and the word suicide going over and over in my head. I started to think and plan how I could do it, my thoughts became obsessed with tablets and how many I would need to end up in hospital and thoughts of knives and sharp objects I could harm myself with such as tweezers and razors and where I could find them in the house. I didn’t wake my husband and tell him because I didn’t want anyone to know, I was ashamed that I wanted to do it and I was ashamed of how real it felt. The next morning by about 10am something made me realise I had to tell someone. I don’t know what it was, perhaps my previous experience with mental health problems, or my gut instinct but I knew I needed to because I was so very afraid of what I might do. I told my husband and we cuddled and cried together. My parents (who had supported me through depression before) came over and after more tears we came up with a plan to get an emergency GP appointment the next day (a Monday). After making a plan, I felt a bit better but the thoughts did not go away, they kept going round and round in my head, I was so frightened of myself and what I might do. I took a shower and the desire to harm myself became too much and I pushed my razor into my skin. I wanted to make visible the pain that was going on inside me, to take back some control. Fortunately, the razor was too blunt to cut but it did leave an indentation for hours later which was still there when I saw the GP. She was very concerned and put my reaction down to the new antidepressants, ironically a medication that was supposed to help my mental health had sent me down to depths I had never reached before. I had had a very rare reaction to them. She took me off the new antidepressants and put me back onto the ones I was used to, to stabilise my mental health. At this point, having a baby no longer mattered, we had to do what was best for my mental health and get me to a stable, safe place. The GP hesitated over calling the Mental Health crisis team but once established that I would have someone with me 24/7 and all knives sharp objects hidden she relented. I was relieved to find out that it was the medication causing these awful feelings but saddened also to think that others had to live with these irrepressible thoughts all the time. The terrible thing was I couldn’t just stop the medication straight away, I had to reduce the dose down gradually over 2 weeks, so the bad thoughts continued. It took 6 long, frightening weeks to get rid of those thoughts altogether and then a further 6 weeks of being back on my usual antidepressant for my mental health to improve. Those first 6 weeks were scary, I was haunted by suicidal thoughts and thoughts of harming myself. My brain automatically looked for objects I could use and even if I saw a sharp object on TV I looked at it in a different way, how I could use it. I was so afraid of what might happen, what I might do. I was not left alone during that period, I was always with someone, my husband took time off work to look after me and when he couldn’t be there my parents were there. It was an impossible and traumatic time for us all.

We took it minute by minute, hour by hour and day by day and by January I was feeling more like my old self and I was able to trust myself to be on my own again and start to build up some physical and mental strength. It wasn’t easy but I am progressing slowly and steadily towards better health. I am well enough now (almost exactly a year from that last transfer) to be back at work on a very slow phased return. It has been brilliant to be back out in the world again, mixing with people and trying to get back into normal life. My mental and physical health is not back to where it was prior to IVF but I am seeing small improvements every week. With regards to our infertility struggle, we are still very much in limbo. I am awaiting some much needed counselling with a local charity that specialises in pregnancy and related losses such as infertility and IVF. We have come to the decision that we have reached the end of our IVF journey and that we simply cannot take the risk of coming off my antidepressants or any of my other chronic illness medication again. For now, we are focussing on improving my physical and mental health as much as possible and enjoying time together again. We are facing a future of being childless, not by choice, which brings another aspect of grief and loss. I’m not sure how we will come to terms with this but I do know that after everything that we have been through this past year, we have a combined strength that neither of us knew existed and we will keep fighting and together we will be ok.

If you have any comments or questions please feel free to contact me, I am always here and open to discussion but am not a medical expert. Please contact your GP for medical advice or if you are at Crisis point and you don’t have anyone to talk to please contact the Samaritans who are always here to listen. https://www.samaritans.org/. Fertility Network UK also provide a support helpline details of which can be found here https://fertilitynetworkuk.org/how-we-can-help/support-line/.

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M.E. Awareness week – 6th-12th May 2019. Better late than never…

Myalgic Encephalomyelitis (M.E.) and Chronic Fatigue Syndrome (C.F.S) are a different name for the same set of debilitating, life changing symptoms, experienced by an estimated 250,000 people in the UK and 17 million worldwide (Action for M.E. www.actionforme.org.uk). I was diagnosed with M.E. in September 2017 but my M.E. specialist believes it began at the same time as my PoTS in 2011. We still don’t really know the cause or reason for me becoming ill with either of these conditions and that is the most frustrating thing. I was so fit and active beforehand, I used to enjoy the gym and running, an active social life and had a full time job which I cycled to day in day out. I just woke up one day and felt ill, with flu like symptoms and couldn’t get out of bed and stayed there for a very long time. I then developed a urinary tract infection which was persistent even after several lots of antibiotics. It turned into a kidney infection and I became even more poorly. Little did I know, that it would take me 18 tortuously long months to even start getting my life back on track, with many of those bed and housebound. It was an incredibly difficult time in my life, going from being completely independent to having to rely on those around me for everyday care and support. With persistence and determination, I did start to get my life back on track again and returned to work after a long phased return but the M.E. is always there snapping at my heels if I do too much. I am now in a bad flare up again but am hoping to return to work again in the not too distant future.

What is M.E./C.F.S? Action for ME state that:“M.E. is a long-term (chronic), fluctuating, neurological condition that causes symptoms affecting many body systems, more commonly the nervous and immune system. People with M.E. experience debilitating pain, fatigue and a range of other symptoms associated with post-exertional malaise, the body and brain’s inability to recover after expending even small amounts of energy. Not everyone will experience the same symptoms so it’s important not to compare someone who has M.E. to another person who has the illness. People with M.E. can vary enormously in their experience of the illness, and also how long their symptoms last. Some make good progress and may recover, while others can remain ill for a number of years and may not get better. Some people find that they don’t go back completely to the way they felt before they became ill, but they do recover sufficiently to lead happy and fulfilling lives.”

My experience of M.E is very similar to the above except that I have periods of time where my symptoms get worse and I am back to being bed bound again. This is so frustrating because it’s like starting all over again and building up from nothing. Imagine having to do everything in such small stages because if you dare to do too much, you will be back at square one again. My current flare of my health problems seems to be due to the two rounds of IVF that I had last year putting extra stress and strain on my body, physically and emotionally. M.E. bodies are very sensitive to extra stresses and strains and can easily be tipped over the edge. Looking back, I perhaps should have realised that undertaking IVF would have caused a relapse but I couldn’t live with not trying and never knowing whether it would have been successful and ended in our dream baby. It’s easy to say that with hindsight though, at the time of undertaking IVF I felt well and I am glad that we gave it a try. But now I am paying the ultimate price for that.

M.E. symptoms – the Action for M.E website states that: “Everyone who experiences M.E. has a different pattern of illness, and symptoms and severity can fluctuate and change over time. M.E. is not “feeling tired.” Simple physical or mental activities, or combinations of activities, can leave people with M.E. feeling utterly debilitated. They can also experience an increase in other symptoms. The impact of this may be felt straightaway but it can typically take a day or two to kick in, and is not significantly improved by resting. This is a key feature of the way M.E. affects people, and is known as post-exertional malaise (sometimes called ‘payback’). Along with post-exertional malaise, people with M.E. may experience the following symptoms:

“Feeling generally unwell: having flu-like symptoms (often called “general malaise” by doctors) and recurrent sore throat, with or without swollen glands.”

“Pain: aching muscles or joints: nerve pains or pins and needles: headache or migraine: twitching muscles or cramps: abdominal pain (stomach or bowel problems): chest pain: back pain. If pain, especially muscle pain, is more of a problem than fatigue, fibromyalgia may be an issue.“

“Sleep disturbance: unrefreshing sleep: difficulty getting off to sleep: waking for long periods in the early hours: light, dreamy, restless sleep: sleep reversal (for example sleeping from 4am till midday): hypersomnia (sleeping for a long time).“

“Problems with concentration, thinking and memory (“brain fog): reduced attention span: short-term memory problem: speech and language problems, including word-finding difficulties: inability to plan or organise thoughts: loss of concentration.“

“Problems with the nervous system: poor temperature control: dizziness on standing or sitting up: hyper-sensitivity to light and sound: sweating: loss of balance: poor circulation.“

“Digestive problems: nausea: loss of appetite: indigestion: excessive wind/bloating: cramps: alternating diarrhoea and constipation: Irritable Bowel Syndrome.“

“Intolerance and increased sensitivity to: bright lights: noise: odours: some foods (for example dairy or wheat): some medications: alcohol.“

“Frustration, anxiety, low mood and depression are sometimes experienced by people with M.E. as a consequence of having to cope with the impact of the condition and its symptoms. This does not mean that M.E. is a mental health condition, and it should not be treated as such.”

Wow! I bet you are thinking, what an absolutely exhausting list of symptoms and that’s just reading it! Not everyone has the same symptoms or as many syptoms maybe just a few from each section and in differing severities and extremes. Those of you that have read my blog about PoTS will see that many of the symptoms overlap and there comes the difficulty with diagnosis – some medical professionals seem happy that they coexist alongside each other, others not so. The most debilitating symptom that I suffer from is the fatigue and it is so different from the usual kind of fatigue you experience after a bad night’s sleep or after a heavy night. It is waking up day in day out after a good 8, 9, 10 hours sleep and still feeling the kind of exhaustion that makes it difficult to emerge from under the duvet. Everyday. Everything feels heavy, lifting a limb is like lifting an elephant. Imagine how you would feel when you wake up if the previous day you had donated a pint of blood, then went on a major drinking binge, danced all night and had two hours sleep! Yes that! I am capable of feeling very hungover without a drop of booze passing my lips. Its worse if I have had a busy day the day before (and by busy, I don’t mean normal person busy, I mean maybe doing one thing!) My second biggest symptom would be related to my digestive system and abdominal pain, caused by my Colonic Dysmotility. This is a constant and is with me day in and day out causing significant weight loss and weakness. I feel nauseous on waking most days and continue to do so throughout the day. My sleep problems have been vastly improved since I started back on an antidepressant but without it I am awake until the small hours. Ironic isn’t it that someone who is so fatigued can not sleep. My brain fog can present in different ways as described previously in my PoTS blog but mainly consists of getting words in a muddle and losing things! My nervous system suffers as well including night sweats, sensitivity to noise and bright lights as well as poor temperature control (being either boiling or freezing but never in between) and poor circulation.

Diagnosis of M.E. is typically complicated. M.E. can be mis-diagnosed and mis-managed and sometimes people go for years without a clear diagnosis. Often sufferers are wrongly diagnosed with mental health problems such as depression or anxiety and sent on their way. Sadly there is still a certain lack of belief in the condition amongst the general public and even amongst some medical professionals today.

The Action for M.E. website states:“There is currently no specific test that can detect M.E. Potential biomarkers – a characteristic by which a particular biological process or disease can be identified – are still being investigated. M.E. is instead diagnosed by excluding other illnesses that share the same symptoms. This should be a positive clinical diagnosis made on a well-characterised constellation of symptoms. The earlier the illness is recognised, the sooner symptom management and support can begin. Many people with M.E. find it helps to keep a diary of their symptoms so that they can take this to their GP. Once you have a diagnosis of M.E. your GP may be able to refer you to an M.E. specialist (subject to availability in your area) who will be able to work with you on ways of managing your symptoms. Most specialist clinics don’t accept self-referrals so it’s important that you get a diagnosis if you’d like to see an M.E. specialist. While there is currently no diagnostic test specifically for M.E., a study published in 2017 by a group of Australian researchers in the Journal of Translational Medicine claims to have identified a protein present in the blood of people with M.E. and C.F.S which they say has the potential to one day become a blood test for the illness”.

A further study you may have read about in the press last month has detailed that US researchers at Stanford University have potentially found a way of creating a diagnostic blood test for M.E., which measures the differences in electrical signals given off by cells in the immune systems of people with M.E.. The study needs to be expanded and trialled with a larger cohort of patients but it’s looking promising. How great would it be to have a blood test to reach diagnosis quickly and put the M.E. doubters to shame. More information in the following link: https://www.independent.co.uk/news/health/chronic-fatigue-blood-test-me-myalgic-encephalomyelitis-stanford-a8891906.html

There must be some treatment for this illness that so many people live with day in, day out? Well, sadly no, not really. Some of the symptoms can be treated such as antidepressants for sleeping problems and anti emetics for nausea but each person is treated differently according to their symptoms, there is no set treatment or no cure. Controversially the N.H.S. offer C.B.T. (Cognitive Behavioural Therapy) as a treatment which helps to address the thoughts and feelings around the illness, but doesn’t go anywhere near treating the cause. Many people with M.E. feel this is an insult and implies that the illness is ‘all in their head’. The N.H.S. controversially again offer G.E.T. (Graded Exercise Therapy) as a treatment which involves sufferers gradually increasing an exercise such as walking or swimming over a series of weeks, months or years. Again many people with M.E. can not even get out of bed so see this as an insult or a thankless, impossible task. The N.H.S. also suggest activity management, lifestyle changes, sleep, rest and relaxation, using mobility equipment to be able to go outside and to make any changes necessary at work that could ease things.

What helps me to get my life back on track initially after a relapse, is complete bed rest for as long as is needed in order to not feel completely drained and exhausted. If I try to do anything at this stage, I just relapse again and go right back to the start. How long that period of time is, depends on how bad the relapse is. I then find activity management or pacing helpful. This means that I have to choose how I am going to spend my small amount of energy that I have gained that day. Imagine if you charge your mobile up at night time and it only charges up to 20% rather than 100% you would have to choose carefully how you would use that charge throughout the day so the battery doesn’t run flat. Well it’s the same for M.E.. Even after a full night’s sleep, our batteries do not charge fully overnight. Sometimes they may charge to 5%, sometimes to 10% and if you’re really lucky 50% but you have to plan very carefully how you will use that battery up whether it’s taking a shower (10% gone), watching Netflix (5% gone), a chat with a friend on the phone (10% gone) and very quickly you have run out and need to rest again to prevent a relapse the following day. You can borrow battery power from the next day but at a price – payback, which means total bed rest again due to exhaustion. There is a way to gain some battery power though or at least stopping the battery draining so quickly and that is interspersing any ‘activity’ with rest. And that doesn’t just mean physical rest, it could be mental or emotional rest too. My favourite way of taking a rest break is to meditate because I find it is the best way to completely shut off my mind and body. It’s not just physical activity that drains the battery, it’s anything that stimulates the mind such as noise, conversation, bright lights, anxiety and depression. All of these things drain battery power too so a combination of techniques is required to rest effectively. If I have something big coming up then I rest in the days leading up to it to charge my battery as much as possible and also allow a day or two after to rest and recharge. I gradually find that if I obey the rules of not going over my battery limit for the day, I eventually gain more and more battery power so that I can function again, but this is a very long, frustrating, difficult ‘trial and error’ process and can take months or even years. I never really know how I am going to feel from day to day so find it difficult to make plans in advance. But hey ho, spontaneity is sometimes good! As are very understanding friends and family (thank you – you know who you are). I try to eat healthily and take multivitamins but I am unsure whether this really helps at all. I am starting a new probiotic supplement tomorrow called ‘Symprove’ which works on the bacteria in the gut to improve the good bacteria. Fingers crossed it helps!

I was hoping to publish this blog in time for M.E. Awareness week, which ended on Sunday 12th May but what’s a day or two between friends when you are dealing with chronic illness. I was also going to inform you of the #millionsmissing event that took place on Saturday 11th May in Hayhill in Norwich. I was not well enough to attend but my parents went on my behalf and heard some interesting stories from other people with M.E. as well as seeing the poignant display of empty shoes of the #millionsmissing who were too ill to be there too. Much of the day was covered on social media and the live talks are on the Millions Missing Norwich Facebook page if you are interested in them. There were similar events taking place across the UK and the world, raising awareness and demonstrating for better patient care and research. One of the things I learnt about, was that there is research taking place locally into the gut biome of M.E. patients at Norwich Research Park at the Quadram Institute. Dr Dan Vipond and Katherine Seton (an M.E. patient herself) spoke about the work they are carrying out on patients with severe M.E. and the bacteria in their guts. I found this somewhat comforting that there is something happening nearby that could prove promising for the future. More information can be found about this on the Quadram Institute website (www.quadram.ac.uk).

I am heading off to conserve some battery power now for the rest of the day but as usual if you have any comments, questions, queries, feedback, as ever please do get in contact. Much love, Emma xx

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Confessions of a cat Mum…

Mother’s Day, for me, is a mixed bag. I have the most amazing relationship with my Mum. She is my friend, confidante, support, rock, advocate, strength and (at times) my carer. Since I’ve been off sick she visits everyday (along with my Dad). She also does our housework to allow me to spend my limited energy on other things. I admire my Mum for the amount of love that she has to give to everyone and everything and how she is a truly selfless human being. She has this innate desire to mother and look after others, putting everyone else’s needs above her own and that is something that I have always aspired to. Mother’s Day gives me a chance to thank her, celebrate her and to put her on the pedestal that she so deserves. She really is the best.

I always thought that I would be a Mum. I mean, I hadn’t even questioned it, I spent most of my younger years trying not to get pregnant but I just assumed it would happen one day. I am of course Mum to a wonderful furbaby, Herbie, and love that I have this little bundle of fluff to nurture, that needs me (sometimes) for love and cuddles (but mostly food!). However, our struggles to conceive a child of our own have left the other side of the Mother’s Day coin bare. I have so much love and nurturing to give a child but nowhere to channel that love. Last year (2018) we found out on the Friday before Mother’s Day the devastating news that our IVF cycle had failed. Shit timing, huh? Talk about rubbing salt in the wounds! Mother’s Day was a write off and we spent it huddled together hiding from the outside world and social media, trying to forget that the day even existed. It was a blur.

I was afraid and that fear was very real. I was afraid that I would not get the same opportunity to Mother a child in the way that my Mum mothered me and that I would not have a chance at having the same amazing relationship that we do. I was afraid that I would not have a family to grow old with and that I would be lonely in later years with no children or grandchildren. I was afraid that I would not be able to create something that is a little bit of me and a little bit of my husband (I wondered what our child would look like?). I was afraid that I would miss out on all of the fun family activities that come with being a parent that I see other families enjoying. I was afraid that we wouldn’t ever be truly happy without having children. I was afraid that we would be left behind and left out. I was afraid that I wouldn’t be able to give my husband the child that he so greatly deserves. I was afraid that I would never know what it feels like to have a baby grow inside me but most of all I was afraid that I would never know what it feels like to be a Mum.

One year and one more failed IVF cycle on and that fear still feels real and raw especially at times of vulnerability. But what I have realised very slowly and gradually over the last few months with the help of some very special people in the Instagram TTC community, (@thisisalicerose and @tryingyears, I salute you!) and my wonderful husband and family is that the fears that I had/have are not actually real. They are future projections of a possible life and what it may or may not look like. But no one can predict the future can they? No one knows what is going to happen tomorrow or the next day or next month or next year. I hate using clichés but ‘I could be run over by a bus tomorrow’ pretty much covers it. I realised that I cannot carry on living my life in fear of something that may or may not happen and have started to try to focus on the present and what makes me happy today. I want to get well again and get back to work, so I can live my life to the full and that is my main focus for now. I try to meditate daily to stay present, rather than dwell on the past or future. I try to treat myself with kindness, as I would a friend who was going through such a difficult time. I still have dreams and ambitions for when I am well such as doing Pilates, going to the cinema, or on a spa day, holiday planning or doing some more study but I try to keep these goals realistic and manageable. Of course this is not always easy and there are days when I crumble at how unfair life can be and I allow myself some healing tears. After all, we all have our own cross to bear and our own hardships in life, whatever they maybe and this is ours.

Mother’s Day will always be tinged with sadness for us as it will for many people for various reasons alongside involuntary childlessness. But this year we are trying to take control and keep busy by celebrating the wonderful Mums that we are lucky enough to have in our lives right now. Right here. Today. Not some future projection. We are hosting them for afternoon tea and cake along with our Dads, my sister-in-law and her partner. Everyone is going to bring something so it is not too difficult for me physically and doesn’t set back my recovery. Most of all though, I am going to be kind to myself and give myself a big pat on the back for getting through the last year. Although I am not an ‘official’ Mother, I have put my heart and soul into trying to become one and I survived and that is good enough for me. I wish you a peaceful Mother’s Day weekend and if you find this a difficult time then I understand. My door is always open.

Please get in contact as usual if you have any comments, feedback, etc. They will be warmly welcomed.

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Salt mountains…heart rate through the roof…night sweats and Granny tights…it can only be PoTS!

I’m guessing most of you have not heard of Postural Orthostatic Tachycardia Syndrome (PoTS) and that’s ok, I hadn’t either and neither have most doctors! It took me 8 months to get diagnosed after falling ill in February 2011, which felt like a lifetime but hearing others stories it turns out it could have been much longer. My symptoms were crippling fatigue, a high heart rate on standing, low blood pressure, dizziness, nausea, no appetite, night sweats, palpitations, headaches, brain fog, shortness of breath and chest pain, all of which kept me bed bound for most of the year. So terribly frustrating for someone who previously was very fit, active and had run a half marathon! I had all of the blood tests under the sun but everything came back normal or near normal apart from anaemia. I was referred to several specialists to no avail. It was an Endocrinologist (hormone specialist) who eventually diagnosed me after I googled my symptoms in frustration and came up with PoTS and insisted that I be tested. She had been involved in some PoTS research when she was a student and though it wasn’t a speciality of hers she agreed to test me. To my shock (and hers too) Dr Google in this instance turned out to be right! I eventually found my way to my current PoTS specialist at King’s College Hospital in London via my local cardiologist – turns out they completed their medical training together – another stroke of luck! I can totally see why it takes others much longer to be diagnosed. Many people are misdiagnosed at first with conditions such as anxiety (due to the high heart rate) and Chronic Fatigue Syndrome (due to the debilitating fatigue), delaying their true diagnosis further which is why it is incredibly important for awareness of the condition to be raised.

But what is PoTS I hear you cry!? I am no medical expert but I do have a good understanding of PoTS and the effects it has on my body. Please check with your doctor before making any changes. According the PoTS UK charity website (www.potsuk.org) PoTS is defined as:

“Postural Tachycardia Syndrome (PoTS) can be a life altering and debilitating chronic health condition.  Simply standing up can be a challenge for people with PoTS as their body is unable to adjust to gravity. PoTS is characterised by orthostatic intolerance (the development of symptoms when upright that are relieved by lying down).  Symptoms include headaches, fatigue, palpitations, sweating, nausea, fainting and dizziness and are associated with an increase in heart rate from the lying to upright position of greater than 30 beats per minute, or a heart rate of greater than 120 beats per minute within 10 minutes of standing”

PoTS is an abnormality of the Autonomic Nervous System which controls many bodily functions that happen automatically without us having to think of them such as heart rate and blood pressure regulation, digestion, bladder and bowel control, sweating and stress response. When someone with PoTS stands up or even sits up there is no automatic adjustment to gravity that a ‘normal’ person has (i.e the blood vessels in the legs do not contract) so their blood pools in their legs, feet and abdomen instead of circulating their body and reaching their heart and brain. To compensate for this the heart rate increases to try and get the blood up from the feet to the brain and other vital organs.

Diagnosis is usually via an Active Stand Test or a Head-Up tilt table test, during which the patient is strapped to a special table and tilted upwards to 70 degrees to see how their heart rate responds. To be given a diagnosis PoTS UK state that a person needs to have “a sustained increase in heart rate of greater than 30bpm within 10 minutes of standing” (http://www.potsuk.org/diagnosis). The tilt table test sounds a bit like a medieval form of torture and for me it was! It is designed to see how your heart rate responds to being upright and if positive it will bring on all of your symptoms but it is necessary to go through it to receive a positive diagnosis. The patient is hooked up to a blood pressure monitor, heart rate monitor and an oximeter to see what is happening inside. During my test the nurse was great and kept asking me how I was feeling throughout. They suggest that you stay upright for 45 minutes but I was able to ‘come down’ after 16 minutes because they had what they needed and also my stats stopped recording due to me being so cold and shaky once the blood started pooling. More on diagnosis here http://www.potsuk.org/diagnosis.

So what’s it like to live with PoTS? What are salt mountains? Granny tights!? Purple feet!? Basically, our ‘Potsie’ (somewhat endearing term used by people with PoTS within the PoTS community) heart rates go crazy when we stand up and my heart rate can increase up to 130 bpm just making a cup of tea. My activity tracker readings are therefore very interesting – I usually spend about 4-5 hours in the fat burning zone per day without even donning a pair of trainers! Exhausting! About 30% of PoTS patients will actually faint to allow blood to get to the brain, I am lucky in this sense because I have only fainted 2 or 3 times since I was diagnosed. Others faint 2 or 3 times a day!

Some things that us Potsies can do to help our symptoms follow. Medication is one of them and as I am not a medical expert I won’t dwell too much on this, just know that each Potsie is different in their response to medication and that it is mainly trial and error. There are no set medications for the treatment of PoTS and many are unlicensed to be used for PoTS so can only be prescribed by a specialist. See http://www.potsuk.org/medication_overview for more information.

Many of us Potsies are told to increase our salt (3g-10g per day) and fluid intake (2-3l per day), which has a knock on effect of increasing our blood volume and therefore our blood pressure. One won’t work without the other, the salt clings to the water and makes it stick around in the body longer rather than just be peed straight out. My salt cellar is my best friend! I actually drink water with salt added in the mornings and add salt to all my food – I joke that I have my own personal salt mountain! So if you invite me round for dinner make sure the salt cellar is full. Adding salt however is only recommended for those with a low blood pressure so please consult your doctor first. For more information see http://www.potsuk.org/diet_and_fluids

Another recommendation from the specialists is to wear medical compression tights, socks and sometimes spanx. The compression wear is designed to force the blood back up our legs towards our heart and brain to stop blood pooling. This is why my wardrobe is made up of items that go with tights. Great you say, anything that helps right? Well yes and no – I don’t mind the black ones, they look just like normal black tights but the beige ones for the summer are very Nora Batty – thick and dark in colour! This is not a fashion choice for me but a necessity to help with the blood pooling and controlling my symptoms. I do also wear tights under jeans in the winter or I can get away with wearing compression socks under them instead. There are also other forms of compression clothing available such as sport leggings that athletes wear. More guidance here: http://www.potsuk.org/compression_clothing

Temperature regulation is sometimes tricky for us Potsies because it is a part of the Autonomic Nervous System which is often out of whack. Different Potsies suffer at different ends of the scale – heat and cold. I suffer with terrible night sweats – even in the coldest winter nights I wake up in a pool of sweat and have to get up, cool off, change and get settled again. To help with this I have several layers of bedding all year round, so my standard is to just sleep with a sheet, then I have a thin blanket to pull up over me if I get cold and a second one if I get super cold. The trouble is I also get bloody freezing cold too. I mainly have freezing cold hands and feet when I am upright but I have night sweats and am boiling when I try to sleep. Go figure! More guidance here http://www.potsuk.org/temperature_regulation

Potsies often suffer with digestive problems, again due to this being part of the Autonomic Nervous System. When food enters the tummy of a normal person, blood rushes to the tummy to help with the digestion. In us Potsies it also tries to do this for us but it is more important for our blood to reach other vital organs such as the brain so digestion plays second fiddle. We are advised to eat little and often because it is obviously easier to digest a smaller amount of food than a larger. This has affected me quite severely. Every time I eat my heart races up into the 100s to try and compensate, because not only is the body trying to cope with being upright it is trying to digest as well. I had a big flare up with my digestive system in 2015 and my PoTS specialist referred me to a Gastroenterologist with experience in PoTS and I had several tests which diagnosed me with Colonic Dysmotility meaning that my colon does not work properly to move the food along. I will talk about this in a further blog but just know that because of this I deal with a pain in my abdomen all the time and even more so when I eat. I have lost a lot of weight due to the pain and I am seeing a specialist dietician who has helped me to work out what I can eat with the least pain following two diets (FODMAP and low histamine). We can also suffer with bladder dysfunction again due to our wonky Autonomic Nervous System not playing ball. My bladder lacks sensation so I don’t receive the signals in my brain that it is filling up right until the last minute which causes all sorts of urgency issues. More to come on bowel and bladder issues in a further post which I think I will call The Nitty Gritty!

Another PoTS trait is the fatigue that accompanies the syndrome. Dealing with the fatigue is a huge topic and I am going to dedicate a whole blog post to this later on when I talk about Chronic Fatigue Syndrome but just please be aware that when we talk about fatigue we are not talking about the kind of fatigue where you can just have an early night and feel better the next day. It is a constant feeling of a deep seated fatigue that sadly becomes a part of our lives. I have learnt ways to cope with it such as pacing, using a walking stick and using a wheelchair but it is always there, always reminding me not to do too much or I will pay for it. I use my wheelchair if I know that I would otherwise be standing for too long such as in the supermarket, a trip to the city, a queue at the bank or a day out. This helps to manage my heart rate increases. Sometimes seeing a (relatively!) young person in a wheelchair or using a stick – gets a lot of stares. And heaven forbid should I actually get out of the wheelchair and walk for a bit – people can’t seem to get their heads around the fact that I’m able to walk. I was self conscious of this at first but I know that I need my aids to live my best life. I use my stick for those dizzy moments when I stand and walk a small distance, usually when I am outside and there is nothing to steady myself on. I think of it as damage limitation! I also do love a good lie down! Anytime, any place, anywhere! More info here http://www.potsuk.org/fatigue_management

One of the lesser known symptoms of PoTS is brain fog, due to our Potsie brains not getting enough oxygen when the blood pools, leaving us unable to think straight. I do suffer from this and have several what I call ‘blond moments’. Brain fog affects my language – I often can’t remember words at all and resort to saying “you know the thingy” or I get the letters of words in a muddle such as Par Cark or just feel like my head is full of cotton wool or jelly. Things often disappear and then reappear in odd places – we found the cheese in the cutlery drawer once and the salt cellar in the fridge. I use my calendar on my phone to help me remember things I need to do. It works as long as I don’t forget to do them!

Another thing that is normal to us Potsies but we often forget is strange to others is that without compression wear our legs and feet gradually turn a lovely shade of deep purple when standing or sitting. If you have ever been on holiday with me (somewhere too hot to wear compression tights) or on a spa day with me you will have seen this in action, don’t worry my feet are not going to fall off, its the blood pooling southwards! A sure sign that I need to raise my legs. Its not a great look with a summer dress though and I do get a few stares when away! I’d happily answer people’s questions about it if they asked but they don’t seem to.

Standing up in the shower is a big ‘no, no’ for us Potsies. It’s one of the hardest things to do because of being upright and hot at the same time. My shower chair is a godsend and helps with the dizziness, as is dry shampoo for those days when I just don’t have the energy to wash it. I have to rest after a shower because my heart rate is usually going pretty fast. I’m quite good at doing the looking fine but actually feel like I’m about to pass out thing, because I don’t want to say anything, or when people ask me how I am, I just say fine. I think this is probably something I need to work on.

Well done if you’ve made it this far! I hope that’s given you an insight into PoTS, now for an update on what’s been happening since my last blog post. I mentioned that I had been off work for 6 months and was hoping to return soon. Well that is yet to happen because I have had a nasty ear and sinus infection with a high temperature for the last 8 weeks that I just cannot get rid of. I’ve just finished my 3rd lot of antibiotics and am hoping that they will do the trick but the problem is I think I am over it and it then makes an unwelcome return. Bit like Arnie! My GP has suggested that I come off the Fludrocortisone that I mentioned in my last blog because it is a steroid and it suppresses the immune system, which could be why I can’t shake the infection off. So I am now starting to gradually reduce it but as ever these things can’t be done quickly. It’s so frustrating because all I want is to be able to get on with my life and get well so that I can return to work and we can make some decisions about our future. My life feels like it is on hold at the moment waiting for my health to catch up. Thanks so much for reading and as always if you have any comments or questions, feedback please let me know. I have been so overwhelmed with all the lovely comments I received from my last post. Those of you that follow me on Facebook and Instagram will have noticed that I am immersing myself in the TTC and chronic illness communities. This has really helped to keep me sane over these last few weeks so let’s continue to keep the conversation going. Much love xxx

Posted on by chronic_mumma_in_waiting · 4 Comments

If it doesn’t kill you it makes you stronger, right?

I bloody well hope so! My reasons for writing this blog are not for sympathy or pity, but to enable me to find a way forward through the fog that is chronic illness, infertility and depression. I have always felt that writing is cathartic and hopefully this process will enable me to bring all of my thoughts together and work out a way to move forward. For a while it helped to keep things private but it has now come to make me feel like I’m harbouring a ‘dirty secret’, which couldn’t be further from the truth. Also if I am able to help others going through similar, then we maybe able to support each other and keep the conversation going.

My chronic illness ‘journey’ began back in February 2011 when I became suddenly ill, almost overnight only a couple of weeks after my 30th birthday. After 8 months of being bed bound and unable to work, go out or in fact function at all I was diagnosed with Postural Orthostatic Tachycardia Syndrome (PoTS for short). To avoid this blog becoming the longest in history I will follow up anything in bold with a further blog post in time. Suffice to say I had gone from a very fit, independent young woman, to one who struggled with showering, dressing and doing the simplest things and having to rely on my family. Having previously been a gym bunny and a runner I understandably struggled with the changes.

I was then diagnosed a couple of years later with Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS). The boundary between PoTS and ME/CFS is very unclear and the severe fatigue associated with each condition seem to overlap each other significantly. Along with this diagnosis came a further probable one of either Mast Cell Activation Syndrome (MCAS) or Histamine Intolerance (HI), both conditions are fairly new and misunderstood making a definite diagnosis difficult. MCAS and HI are connected to allergies and for me manifest in the food that I eat irritating my digestive system and causing pain. It was this illness that made me lose a significant amount of weight. I was also diagnosed with Colonic Dysmotility, which means my colon is not working properly to move the food along my digestive tract and therefore causes more pain, loss of appetite and weight loss. Along with this came chronic constipation and a rectocele and the need to use laxatives daily to move my bowel as well as bladder dysfunction caused by PoTS affecting my autonomic nervous system functions.

Needless to say this was all a massive change in my life and I struggled with the physical and mental changes. However, it wasn’t all doom and gloom, there were good things happening in my life too! 18 months before I became ill I met my wonderful (now) husband who proposed to me on a beach in Turkey after my first year of illness. He has been just amazing and the fact that he knew me both before and after my chronic illnesses took hold proved to me that he was in it for the long haul. He has become my rock, my strength and at times my carer, not the usual path for a new relationship. We married in May 2013 and wanted some time to ourselves before we started trying for children. Knowing what I know now at age 38 I would not have taken this laid back approach! So we began trying naturally in 2014 and after a year we thought that there maybe a problem so my GP referred us to our local fertility clinic for tests (aged 35, 2015). After various testing and a diagnosis of male and female factor infertility it became clear that the only way we would be able to conceive was via IVF. We were obviously quite shocked to hear this news and we took some time out to make some decisions and for my health to improve as much as possible as well as seeing specialists in London regarding my illnesses and what effect IVF may have on them. In 2017 we decided to go ahead with the IVF and in January 2018 we undertook our first round of IVF on the NHS. Sadly, it failed and after a few months to recover emotionally and physically and a sunny holiday to re group we undertook round 2 of IVF in June 2018 again on the NHS which also failed.

We knew IVF wouldn’t be an easy path but we weren’t prepared for just how physically and emotionally draining it would be. The two rounds took a great effect on my mind and body and shortly after I crashed completely physically and mentally and my depression (that I have always suffered with to a certain degree in my life) made a quick return. My chronic illnesses flared in a huge way leaving me bed bound and unable to do anything for myself. I was soon in the living hell of dealing with a flare of both physical and mental illnesses, a position that was unique to me. I was signed off work by my GP and put back onto antidepressants. My GP suggested an antidepressant which was deemed to be safer in pregnancy (in case we wanted to continue trying in the future) but was new to me. Unfortunately, I was one of the rare people that the exact thing that was supposed to make my mental health problems better, actually made them much worse to the point of feeling extremely suicidal and attempting self harm. I was slowly taken off them and put back onto my original antidepressant which we knew worked for me.

A very difficult 6 months followed but I am now back in a place where I can contemplate writing this blog and moving forward and hopefully getting on with life again. I am hoping to return to work in the not too distant future and have been given a new medication to help my PoTS called Fludrocortisone which is a steroid to help keep my blood pressure up. But where does this leave us in terms of having children? Will the medications I am on now cause potential damage to an embryo/baby? Would I risk coming off them without detriment to my physical and mental health to try IVF again? Will we look into options such as donor eggs, adoption, fostering, surrogacy or will we have to make the difficult decision to remain childless (not by choice)? How will we be able to come to terms with this if this is the decision we make? These are just some of the life changing questions going through our minds right now and I hope to keep the conversation going via my blog. Any comments, suggestions, questions or just love and support are of course always very welcome. Follow my journey on Instagram @chronic_mumma_in_waiting