Toes, knees, shoulders and head – Chronic Illness Challenge, Day 30! 

Finally, starting with your toes and working your way up to your head, name each body part and how you Illness effects it, then say something you like about it. 

Well this could be interesting! 

  • Toes – my illnesses cause problems with all my joints and muscles, but, specific to my toes (lol)… lets see. I fall a LOT (according to the fall prevention team) and once fell down the stairs and broke my toe. Also when my immune system is particularly bad my toe nails fall off (ewww!). Things I like about them, erm.. I only broke the one, I have another 9 and at least it wasn’t a broken leg. 
  • Ankles – once again with the joints and muscles. My right ankle is more of a problem than my left, it crunches if I move it too fast and gives way when it fancies it. I like the fact that the left one doesn’t do that! 
  • Knees – my knees are both problematic, they like to give way when they fancy it. I suffer from water on the knee on the right one but strangly not the left, it needs draining sometimes but I mostly deal with it. I like that my knees aren’t badly affected joints! 
  • Legs – legs in general. My muscles are all weak, partly directly to do with the illness, partly because of time spent wheelchair and be bound. They take a while to get moving every morning and sometimes they refuse point blank to accept any body weight at all. Sometimes I am left completely unable to weight bare on them and I am almost always using some kind of walking aid to get around (mainly upstairs where I can’t get my wheelchair). I’m usually in some kind of pain In them.  Good things about my legs, they usually WILL weight bare, usually with the help of my wheelchair and walking aids they do let me somewhat independent. 
  • Hips – I have pirifotmis syndrome which  causes problems with the muscles that connect the hips to the base of the spine. I am always in pain with my hips or my back and my right hip dislocates a lot. But I have quite wide hips which I like because I think it helped with my pregnancy with Wildchild. 
  • Stomach (and all the stuff in it lol) – I have IBS and gastritis which makes it eating a bit annoying. But I like the fact that these conditions are manageable and that my body provides a home for Wildchild. 
  • Chest – I have asthma and problems with the muscles between my ribs. But I’ve always liked my boobs! 
  • Neck/back – my spine is curved in two places, causing my ribs to be deformed, my neck curves the wrong way and I have an anteriorly slipped disc in my lower back. However I do have this chunk of apparently perfect spine in the middle of my back. I’m very proud of my perfect bit!!!! 
  • Arms/wrists and hands – my arms like to jerk and twitch uncontrollably, which often causes me to throw things. It’s embarrassing, annoying and dangerous. I have had tendinitis in my right wrist since I was in high school. But I like what I can use my hands to create, to craft and to crochet. 
  • Head – I have cervicogenic and thunderclap headaches, which are not fun. I also have almost costant brain fog to differing levels of severity. I do however like the creativity that comes out of my brain. The side of my brain that allows me to live in the fantasy worlds of audiobooks! 

So, that the 30 day challenge done! I’m so proud I managed to do it! I came out of the chronic Illness closet! It’s been a difficult experience, hard to write, probably hard to read and I’ve (sadly) lost a few friends along the way. But overall, I think, it’s been worth it to raise a tiny bit of awareness of what life is REALLY like with a chronic Illness. 

Thank you for reading and following me on this journey. I’ll take a few days and then I’ll be back. My dad wants to guest blog and tell people what it’s like from his perspective! Which will be interesting to read! 

See you soon!!! 

In Sickness and in Health – Chronic Illness Challenge, Day 26

What impact has this had on your friends, family, partner, parents etc. 

Wow. Yeah. My Illness has had a huge impact on those around me. Mainly those closest to me, namely my husband, daughter, parents and sister. My friends have been affected by it but not as dramatically and not as often. 

My husband and I had been together for 6 months prior to me becoming seriously ill. He ended up working part time and moving in with me and my dad to care for me during the day. His job choices have always been dependant upon my health, he cannot work outside of the town we live in because he needs to be able to get to me quickly and he doesn’t drive. He has had to have unpaid leave when I was very unwell and unable to look after Wildchild as I am classed as a dependent. He has had to feed me, bath me and carry me to the toilet. He has looked after me in hospital and out. He has accompanied me to endless doctors appointment, made a ridiculous amount of phone calls on my behalf and fought my corner every step of the way. He has pulled me off the emotional floor and totally held me together when I needed it. He has cuddled me for hours when I could and not touched me at all when I couldn’t. He has picked up so many prescriptions, sorted and dispensed all my medications. He has translated my backwards messed up sentences. He knows before I do when I am about to enter the land of “you’ve totally overdone it” but also understands my want to occasionally pretend to be normal (whether or not he agrees with it is another discussion entirely). I could go on forever he does so much for me, including making sure that I eat and being my personal chef. I don’t think I thank him nearly enough. But I do love and appreciate everything he does and, although I hope to God never to have to repay the level of kindness he has provided me with, if I can I will in a heartbeat. 

My parents. When I first got really sick I was living with my dad, it was just him and me. He has always had my back (and I hope that he knows I always have his). He has always been my rock, my safe place, my home. Throughout my childhood anxiety he was the only one who understood, the one I could turn to and, at one point, literally the only person in the entire world who could get me out of a panic attack.  He has been behind me every step of the way, he has sat in surgeries with me arguing with doctors. He has fought against the benefits system with me and both won and lost. He has paid for me, budgeted with me and helped me to stand financially on my own feet. He has been my taxi, my hospital appointment companion and most importantly my friend. He has sat up a night watching me to make sure I am still breathing and doubtlessly he has worried about me every second of every day. Once again I could carry on forever about how much he does for me and how much I appreciate it. I hope he knows how awesome he is, how thankful I am and how much I love him. 

My mum and sister are wonderfully helpful and supportive, I think that sometimes it harder for them to understand as they have not both been around since the very beginning and haven’t been hit by the same chronic Illness bus as my dad and husband have. They help me however they can, mum makes me food and my sister takes me places they both look after Wildchild and take her to do fun things that I’m not able to do with her. 

Finally, Wildchild. Some people might say that she is the least affected as she has never known any different. Whilst it is true that she has only ever known what it’s like to have a chronically ill mother, no a healthy one, she is also the closest person to me. She relies on me and is dependant upon me. There are things that she cannot do that she would like to because I am sick. There things she knows how to do and things she has to do that most other children don’t because I am sick. She has to put up with people looking at me, asking questions sometimes being rude. She cannot have me do all the fun things with her that we would love to be able to together. She brings me love, laughter and snuggles everyday. She tells me she doesn’t care that I’m sick, that she would still choose me as her mum against all the healthy people in the world. It does affect her but she takes it all in her stride, we find our own ways around everything and we have a wonderful happy time together. She keeps me going and I love her. 

What Social Life – Chronic Illness Challenge, Day 24. 

How have you managed to juggle your social like throughout your Illness?

Firstly another short but sweet entry I’m afraid, really not doing well right now. So cannot spend a lot of time actively doing anything, let alone something that involves a screen. Thankfully the subject doesn’t really leave me with much to say.

My social life, well what social life? I probably go out socially once or twice a year, for a maximum of 2 hours each time. I have to rest more than usual for about two weeks before and the payback is almost unbearable so these social encounters tend to be limited to important events such as weddings.

Managing even my nonexistent social life is still a pain. Every event I am invitied to has to have a serious amount of consideration. How long will I have to rest prior to the event?  How will I get there and back? Does the venue have wheelchair access? Are there people attending that I am not happy seeing me ill? Is it going to be loud/bright/both? How many people will be there? How long can I go for? What meds to I need to bring with me? Is it important enough to me to suffer the payback? Most of the time the answer to that one is no, maybe that should be the first question, would save having to think about all the others.

Basically my “social life” is limited to in house stuff with family and very close friends (even then with regular rest periods). School runs (with support from mum/dad or other school mums).

Then, of course, there is the place where my nonexistent social life ended up. The internet. Thank God for my online friends, spoonies and non spoonies that have loved me, helped me and supported me through so much!!!! You are awesome wonderful people and I’m thankful for you every single day! Mwah!

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!



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.