This too shall pass – Chronic Illness Challenge, Day 23. 

What do you say to yourself when you need a pep talk? 

This isn’t hard to answer, not really. I am a big advocate of positive thinking, I doesn’t treat the disease itself and it definelty doesn’t cure it but it can make a big difference to your feelings and emotions surrounding it. At many times in my history with my chronic collection it would have been so easy to roll over in bed and accept “this is my life now” and give up trying, give up hoping, give up gaining ground. At my worst when I was bed bound for 18 month it would have been easier to do that, to think that that was my lot and just stay that way. 

I am not saying that positive thinking made me able to do things, totally not the case. Bed bound people are not simply a few positive thoughts away from a wheelchair, no, just no. But for me, about 10 months to a year into my stint in bed I decided that if there was anything I could do to make sure that I didn’t stay like this for ever then I was going to do it, and I was lucky because eventually (and yes it was about 8 months before I showed any progress) I began to move forward in the most tiny, most insignificant steps. May have been massively off putting or disappointing for someone else but more me, I chose to focus on them, cling to them, make them count. It was then that I found, positive thinking helped me. Not my physical conditions, thinking positively about having a leg when you are missing one isn’t going to make it grow back is it? But the mental side of my Illnesses are definitely boosted onto the good side by positive thinking. 

I’ve also learnt, over time, that it’s okay to have bad days, down days. It’s okay to cry, to scream, to sit in the dark and watch Netflix all day. That although I may have it much better than some people I also have it much worse than many more. So if I get tired of holding it together and I just need a break from “I’m okay” land it’s okay to take a day or two to simply being sad and acknowledging that my life isn’t what I thought it was going to be. To despise my health and my limitations. To grieve for the wife I wanted to be, the mother I wanted to be, the person I used to be. But that’s the point it is ONLY a day or two, then (thankfully, as I’m lucky) I can pull my shit together and go back into “I’m alright, I’m fine” mode, because I had a break. 

So yes, what do I say to myself when I need a pep talk? Well after I’ve judged where I am on the “coping” scale I decide if it’s time to let it go, if it is, I do, the positive pep talk stuff can wait a couple of days until I can stomach it. If I’m still well within range I look back to how I’ve been and how much better I am now than I used to be. I look at other people that are sicker than me but that manage so much better. I become thankful for how relatively good my life expectancy is in comparison with others. And, if all else falls, I simply repeat:

“This too shall pass”

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Fight for it – Chronic Illness Challenge, Day 22

How do you feel you have been treated by the medical system? Explain. 

Well, urgh, part of me really doesn’t want to answer this because I have so much respect for the NHS and it’s employees. For the care and compassion they provide in an increasingly difficult environment. 

But when you mix the medical profession with some chronic illnesses you come up against issues. ME is one of these conditions. As I have mentioned in previous blog posts there is a lot of people that disbelieve the exsitance of ME, sadly many of such people work within the NHS. 

ME is recognised by the World Health Organisation (WHO) as a neurological condition and has been since the 1960’s, there are also NICE guidelines on how to treat it. Thus, you would think that all medical professionals would take it seriously, but sadly this appears not to be true. 

I have been told that my condition is “all in my head”, I have been treated like I was going mad until I was actually convinced I was. I have been told my other doctors that my condition “does not exist”and that I’m silly. I have been denied treatment and various referrals because it’s “just ME” or it’s “just Fibro”. My life has been made more difficult both physically and emotionally because of other people’s inability to empathise, understand or, it seems believe and follow the findings and guidance of their profession. 

That said other GP’s have been amazing, pushed through referrals, put up with me in tears at appointment, got me the help I needed and have written amazing letters that have helped me get the support I have in place. There are two particular GP’s that have been there for me every step of the way, including during my pregnancy with Wildchild and I cannot fault them. 

The nurses and consultants I have seen in my time have been kind, compassionate, empathic and have really wanted to genuinely help me. They have listened to everything I have had to say and taking me completely seriously, coming up with plans to help me as best they can. They have improved various parts of my chronic collection to the point where they are bearable and manageable. They’ve provided me with water, held my hand as I’ve cried and sat with me when I needed someone. 

When I was hospitalised when pregnant with Wildchild, the midwives and ob-gyn doctors took note of my ME care plan and put me in a side room, with dim lights and tried not to bother me when it wasn’t necessary. Also, knowing that long term hospitalisation would likely cause me more harm than good they arranged for me to go home, and visit the hospital daily for monitoring and tests. Obviously not ideal but much better for my health than a prolonged inpatient stay. Community midwives came to my home when I was too unwell to attend clinics, visiting me at my parents home when I had to stay with them during the day. Without question, without argument. 

When I have had to visit A&E (Emergency Room for those Americans reading) they have always been amazing kind. You see, a few of my conditions, when viewed together often trigger their protocols for things like sepsis and cardiac problems. I go in when this happens as one day, the likelihood is that one of this things might happen and I will miss it, putting it down to existing conditions. They work on the principle of “better safe than sorry” and I’ve been told multiple times they would rather see me and it be one of my chronic collection acting up than not see me and it be something else. I will regularly sit there and apologise to everyone I see, telling them that I’m sorry for wasting their time. They always smile and inform me that I’m not. 

For example, my last A&E visit was last year, when I was two days away from going on holiday. I suffer from recurring infections for which I always have emergency antibiotics to start taking if certain symptoms arise. This particular time I had about half of my normal symptoms but was going away so I phoned 111 for their advice. Of course I ticked all their boxes for A&E and because of the impending holiday I went. Apologising the entire time, as usual. They took me in, triaged me immediately, took an ECG and sent me to ACU and took bloods. A doctor came and after a chat with me (with me still apologising) decided that although my readings were abnormal in the general scheme of things that were normal for me, if I had an infection. They sent me home and told me to take the antibiotics. But they understood and were happy I came in and get checked over. 

So, overall, my experiences with the medical profession have been positive. The majority of doctors have treated me well and all the nurses, consultants and midwives I have been amazing. The problem is the negative experiences I have had have been hard hitting and made a huge impact on my experiences through my illnesses. I am also nervous about seeing new doctors and new consultants. I’m always anxious they will be another professional to add to my “don’t see” list. 

Anyway, the point is, I would never dream of being negative about the NHS. It has its problems right now but the NHS itself is not to blame. The people that work within it do so out of a genuine love of helping people and caring for people. I would be much sicker if it was not for the NHS it is amazing system that needs to be invested in, understood and appreciated. It needs to be loved and cared for, and saved. I am so completely thankful that I have access to healthcare that doesn’t cost me a fortune. Where I don’t have to suffer just because I am poor. The NHS is the most amazing healthcare system in the world. Fight for it. 

“The NHS will last as long as there are folk with the faith to fight for it” – Nye Bevan

With a pinch of salt – Chronic Illness Challenge, Day 21 

What networks or websites have you used for support or information about your illness?

Well yesterday I talked about my favourite and the website (and community) I found most useful when I first got sick AYME. It provides community support for young people with ME up to the age of 24, but is also a brilliant source for information about ME and areas that are particularly relevant to young people with ME (such as advice about explaining to schools, friends and university). 

I have also used the ME Association as a source for information as well as Solve CFS and ME Research but they are more for investigation and research than for support. 

When it comes to Fibromyalgia I have been know to use Fibromyalgia Action UK and Fibroduck Foundation for support and information. 

Other websites I’ve found useful over the years for things like Astma, Allergies, Anxiety and Depression include;

Websites for medical information include NHS ChoicesElectric Medicines Compendium and WEB MD UK.

And I’ve got help with medical related bill reductions and/or benefits from Turn2Us and Citizens Advice

There are many Facebook groups and pages that provide support and information and I have been given ideas, research and found friends on many of them. 

It is important to note that any information you find on the internet could be anything from biased to outright lies. The websites I have listed above are all trustworthy but until you know enough about your condition/s to tell truth from lies make sure you stick to sites scientifically backed up. 

And whilst forewarned is forearmed and information is vital to managing most chronic conditions always take information gathered with a pinch of salt. Mix it with your own knowledge and experiences, search for information backed up by scientific research.

Spoonie Friends for Life – Chronic Illness Challenge, Day 20.

Have you met anyone else with your Illness? Did it help?

Sorry again, today this will be short and (hopefully) sweet. My anxiety it’s really bad at night right now so I’m not really sleeping. It’ll be fine when our finances are sorted again, but until then I’ll just have to get on with it. So excuse me if none of this makes sense, brain fog is a bitch sometimes.

I have managed to meet a few other people with ME and fibro over the years and yes it was helpful. This is physically, however I think the most support and help came from an online community I joined when I first got sick. AYME (Association of Young People with ME) literally was a godsend, it helped support me through the diagnosis, advised me on pacing and provided me with a community of people who understood exactly how I felt and what I faced. Having ME at anytime it’s hard by I truly believe having developing it as a teenager is particularly difficult, as you miss out on being “young” in the same way that teenage parents often do. I could ask questions on community boards and get information and support.

I also have a lot of friends with invisible chronic illnesses that have similar symptoms and affect their lives in similar ways, illnesses like lupus. My best friend has AS as well as fibro so we can support and understand each other. Spoonie friends are awesome, not because others don’t care, but because other spoonies have an extensive knowledge of how it affects you, what cannot be seen and exactly what payback actually is. They can sympathise on your bad days, congratulate you on your better days (days that perhaps non-spoonies wouldn’t see as much of an achievement) and understand if you go for weeks without being able to speak to them.

I think support from others with chronic illnesses is really important and help for. My spoonie support network has made a massive difference in my life with my chronic collection. Spoonie friends are awesome friends!



Only Time will Tell  – Chronic Illness Challenge, Day 19.

How do you feel about the future? 

Well, that’s a tough and rather depressing question. Erm… yeah…. *deep breath* i’ll give it a try, here goes. 

When I look into the future, despite the positive attitude that I try and hold onto, to be honest it’s pretty bleak.

I spend my entire life fighting against the system, the medical system, the benefits system, the government. Most of the issues I face within these systems are caused by the government. My political views aside I will only talk about my experiences and what they mean to my family and our future.

Medical care. With the Illness that affects me the most being invisible, not easily diagnosed and untreatable it has literally always been a fight. ME has been recognised as a neurological condition since the 1960’s and has its own NICE guidelines within the NHS. Despite this there are STILL many medical professionals that do not believe in its exisitance, or believe that it is not medical condition and that it is psychological instead. This makes finding a correct diagnosis and any treatment an uphill fight, all the time. It took 3 years to be diagnosed from the time that I realised my symptoms where not disappearing or improving. Even now I still have a list of doctors who I will not see and one who has actually told me directly that she does not believe in the existence of ME. I STILL have doctors and other healthcare professionals recommending GET (graded exercise therapy) to me, which I previously tried and which caused a massive and rapid decline in my physical ability, it has since become apparent that it is not a suitable treatment for severely affected ME patients. 

However over time the medical profession has become increasingly understanding, there are still many, many disbelieving professionals out there but substantially less than when I first got sick. Hopefully this will continue for the future. 

Over the time that I have been unwell I have noticed so many problems and issues within the NHS and social care. There has been a rapid decline in available treatment and support in the past 6-7 years. It’s been worse lately, I believe this to be linked to the reduction in funding for councils, as they fall the level of social care available falls. As this drops the ability to discharge patients dependant upon home care from hospital becomes almost impossible, this bed blocks hospitals and puts staff and resources under incredible strain. It delays people from receiving necessary but elective treatment and operations, which can lead to worsening condition, further complications and require more extensive, costly treatment. The NHS is indeed in crisis, but it is a crisis of the governments making. I think most people would take a small tax increase to be able have easier access to better care. 

There’s always hope though, in Austrialia they are taking ME and research into its cause a lot more seriously. There have been studies finding causes and possible causes, hopefully this will eventually lead to a diagnostic test and treatment, and, in turn more recognition for sufferers from the medical profession. Hopefully the government will realise they’re mistakes or bow to public pressure and put money into councils and the NHS even if it does mean a slight tax increase. The NHS should be about people and not about profit, that is, afterall, why it was developed in the first place. We really do struggle financially but even we, who already find it hard to make ends meet would pay extra tax to know that our loved ones would be cared for. 

Speaking of our financial struggle, a lot of it is also caused by the benefits system. Both myself and Chris work. We are not (and will always try our best to remain this way) dependant open benefits. That said, due to my health my ability to work is serverly compromised, the job I have is also only temporary (3 years) as is Chris’s ability to work overtime due to my care needs. Thus we are viewed as a low income family. We get help to pay rent through housing benefit, although we pay the majority of it ourselves. Due to being low income we also receive tax credits. I am so, so grateful that we have a welfare system that is there to help us. It does keep us housed and out of poverty and that is amazing. The problems in the system are things like people falling through gaps in the system and that when there is any change to your income (even a possible change) benefits are stopped or suspended with little or no warning or explanation. This needs to stop. 

Our tax credits were recently reduced (without either warning or explanation) from £63 a week all the way down to £5 a week. This is an incredible drop, and we have yet to find out why. We use this money to pay our council tax and internet bill amoungust other things. We cannot plan, rebudget etc if we are unaware a change is going to take place. Also we don’t believe it to be correct and neither does the CAB. Our housing benefit is adjusted around it so that has changed also, although that has increased we are now worried about being overpayed by them, but still needing to use any extra to put towards bills. Along with the CAB we are slowly piecing together what on earth has happened, and why none of the figures (from either the HMRC or local council) add up within themselves, each other or relate in any way to the money we are receiving. The benefits system does need to change, to stop people falling through the net, to make sure everyone that needs help gets it. People need to be encouraged to work but people’s occasional inability to do so also needs to be recognised without as much of a fight. When benefits change we need to be forewarned and have correct explanations where the figures all add up right, not miles different in every letter, and different again in the amount we actually receive. So people are not left in the lurch, unable to afford to pay their rent, or essential bills, such as council tax. Since the change in my tax credits I have been almost unable to sleep, waking up mid-way through anxiety attacks due to worry about how on earth we are going to get through the week, never mind the month. Of course, this has a huge impact on my physical health and abilities leaving me less able to actively do anything about it. 

Positives on this is that we do have a welfare state. That we do have help, that we have a roof over our heads. That somehow we do, every month, find a way to make ends meet, however hard it is. Also that we have such loving friends and family, who would do anything to help us. My mum and dad help us to pay our rent and buy bits here and there for us when they need them. Chris’s parents help with Chris’s travel costs and are currently paying for him to learn to drive, which should give him more job opportunities. I also have some amazing friends, their support is invaluable, emotionally, mentally and some wonderful friends have even helped us financially, without us asking. Recently one friend sent me some money into my Paypal account, this has relieved a huge chunk of my anxiety as it allows me to pay our council tax bill this month, and gives us more time to sort out what on earth is going on. You know who you are, and, if you’re reading this we are so thankful and we all love you. 

So at the moment that is what my future looks like, at least it is all that I can see, because it has been what the last 6 years has been like, sometimes it’s harder to see further than what is right in front of you. 

I try hard not to think too much about the future, as no one knows what it will bring. Maybe my Illness will finally get the recognition and further research they need, maybe they will find a diagnostic test or a medical treatment that will help and show medical professionals it is a condition not a choice. Maybe the benefit system will become more stable and reliable, with advanced warning and explanation of changes. Hopefully one day we will get to the point where we will not need to receive any at all. Hopefully the government will increase funding for local councils and social care will become more effective, maybe this would allow Chris to do overtime and get promoted, dad to have to spend less time around me and get on with being retired and maybe, just maybe, it will save Wildchild from having to feel like she is caring for me. 

But all I can see is more of the same instability, more of the same fight and more of the same struggle in our future. So for now I’m going to focus on the here and now, each day as it comes. I’m going to look to my friends, my family and most importantly wild child and as long as we have each other, I know we can make it through.

Not better, just different – Chronic Illness Challenge, Day 18. 

Today’s entry will probably be rather short and I’m not totally convinced that it will make sense. I’ve got what I describe as a “medication hangover” side effects from strong meds I had to take overnight and not as strong meds I have had to take during the day today. 

Do you think you have become a better person for being ill? Explain. 

Better, I don’t think so, although I’ll never really be sure about that will I? Different? Definitely. The way I think about myself, others and the world has totally changed since I became sick. 

I’ve always been quite a compassionate person, always wanting to help people, worried about upsetting or annoying people. I’m quite empathic by nature and often take on other people’s problems as my own. Both of these qualities have always been there, hence going into professions and jobs where I can directly help people. They have become more pronounced since I became sick, my ability to utilise them has also changed. 

I feel more for people who are struggling because I struggle, I understand what it’s like to be disabled because I am disabled, I know what it is like to struggle with anxiety and depression because of my mental health problems. My ability to empathise and sympathise has grown experientially over the past decade. Unfortunately my ability to actively help has declined at the same rate over the same time. Although I still do my best to help in every way I can. 

I am definitely a different person, I have an in depth understanding of things I never thought I would have experience of, things that I never wanted to have experience with. But nonetheless it has changed my view on life. I appreciate the small, tiny things in every day. Things that I never did before, things that I don’t think I even saw before. I look for the positives in every situation, I focus on the good bits and try to be optimistic. Previously I was a complete pessimist, although not an optimist I now really try to look for the good in all situations. 

So better person, probably not. More compassionate and understanding maybe. Less pessimistic definitely, an optimist absolutely not! More appreciative yes, more able no. Not better. Just different. So different. But I am happy with my lot. 

Not for all the spoons in the world – Chronic Illness Challenge, Day 17 

How would things be different if you weren’t ill?

Well isn’t that a loaded question! Of course I don’t KNOW how things would be different, all I can do is guess from the path my life was on before I got really sick, so let’s talk about that to start with.

Even in 6th form, when I was doing my A levels, I was almost always exhausted. I would fall asleep in the common room and regularly teachers would have to come and find me to wake me up. I really didn’t have the energy or brain power to study on top of everything else. Maybe if I hadn’t have been starting to get sick I would of been able study harder, maybe I would have got higher marks at A level?

When I went into midwifery I was the same, everything was exhausting, I felt stupid although I was just as intelligent as everyone else. Practical experience was hard and nights soon became impossible. Although I eventually did complete the course I have never been cleared by occupational health and have never had a PIN number and therefore never been able practice. Midwifery was my passion, I’m almost certain that if I hadn’t have gotten so sick I would be an active practicing midwife.

I would never have gone into social work. I wouldn’t have helped the people I did but I also wouldn’t have got as stressed as I did.

The one thing I am completely certain of is that if I hadn’t got sick I would be in full time employment and I would be earning more than just short of £300/month.

The rest I don’t know. I hope that I would have been in housing with more stability, maybe I wouldn’t have had to move around so much.

Maybe I would have more kids. I would love more kids but pregnancy makes me so unwell and the decision seems some what selfish being as I’m so compromised. Wildchild was a huge shock and an awesome, wonderful surprise but intentionally planning to have a child with a chronic collection, I’m not sure I could have done that.

Other than those things I have no idea what would be different, I just know that I’m not sure I want it to be. I’ve learnt some important lessons from being ill that I would not want to forget. Also, I don’t know for sure that if I wasn’t sick whether or not I would still have Chris and Wildchild, and THAT is not something I would ever change.

In fact, unless you could guarantee that I would have them, these friends, my family, unless you could assure me they would be the exact same people and I would love them in the exact same way, then I wouldn’t change anything. In fact I would suffer through all the illness, the pain, the confusion, the insanity all over again, just to make sure I had these people in my world. Life with my chronic collection may be hard, it may be a struggle every single day but it is what made me who I am. It is what contributed to how my friends and family view the world, and it is a big part of who Chris and Wildchild are, and change anything about them? Nope, not for all the spoons in the world!!!