I have been given the luxury of time, because of my chronic health issues, to think over the past few weeks about life and death. We take so much for granted that we can easily forget how fortunate we are. We only have the one shot at this life and throughout our existence we have to make choices on how we use and live it. Since becoming a parent I am advocate to my children and will fight with everything I have to keep them safe as much as is humanly possible. I know that I cannot control everything that happens but what I can do is make a choice on how I respond.
We have lost many loved ones over the years and recently we lost our baby girl Skyla Minx, our five year old border terrier bitch. Now to those who aren’t pet lovers she was NOT “just a dog”, she was family. We were blessed to have had five fabulously happy years with Skyla, she was Tara’s dog and spent many hours snuggled up in bed cuddling Tara ~ she helped her cope with her chronic illness and was her best friend. So not only did we lose a cherished member of our family, Tara also lost her best friend. This has affected us all enormously and also our two remaining dogs, Loki and Taylor, who are grieving for a lost member of their pack. In grieving for Skyla I started thinking about the passing of my mum and other family members. Loss comes in many forms, whether the passing of a relative, friend or pet, or the loss of health, choice and freedom.
Whilst musing about different types of loss I came across this chronic illness awareness challenge and thought it was a good way to share my story and raise awareness at the same time. So here it is…
My Response to the Chronic Illness Awareness Challenge.
Question 1: Introduce yourself, what illness/illnesses do you have and how long have you had it/them?
Okay so introducing myself for those of you who know me my given name is Tanya but I also answer to Tonks or Crazy Purple Mama. I’m a middle aged married woman and mum to 3 adult daughters. As for illnesses, I have a few, so will simply list them;
Temporomandibulrar Joint Syndrome (TMJ) ~ diagnosed in my teens.
Chronic Depression ~ Suffered since late teens, lowest point was when I was 18 and living alone and attempted suicide with pill overdose. Although experienced many low points over the years and needed intervention via therapy and medication on several occasions.
Loss of bladder tone and loss of pelvic floor function, diagnosed during second pregnancy requiring a special belt to be worn during my second and third pregnancies and following them had internal electric shock probe to try and tone up bladder and damaged pelvic floor without success ~ so now rely on Tena Lady and always search for a nearby loo when go out, because wetting yourself in public areas is not desirable.
Myalgic Encephalomyelitis ~ been ill with this for years but didn’t get official diagnosis until January 2016.
Diverticulitis ~ diagnosed July 2016
Hypermobility Ehlers Danlos Syndrome ~ Diagnosed February 2017.
Question 2: How have these illnesses affected your life?
The TMJ is easy to live with so long as I remember to wear my mouth guard at night to hold my jaw in the correct position and stop jaw clenching too. I notify my dentist so she gives me rests and short jaw massage during any treatments. Also know when it locks to give it time and eat soft foods.
Having chronic depression has been difficult as the lows are deep pits of misery which take some clawing and climbing to get out of. I have found coping techniques as I gave grown older and can recognize when I need to seek outside help, it has made me more aware of mental health in general and I feel passionate about talking about it and fighting to remove the stigma around it. It worries me how many suicides and attempted suicides there are. I can relate to being in such a black hole and am eternally thankful that my attempt was unsuccessful, at that point in my life I thought suicide was the only answer. We need to talk about mental health and ways to help sufferers giving them information and support to show that help is available. Sadly due to job cuts and loss of funding accessing mental health care and support usually results in a very long wait on a list to be seen which isn’t really acceptable when help is needed immediately. You have to risk your life or be sectioned it would seem to get bumped up the list.
The bladder and pelvic floor issue is just inconvenient ~ long journeys aren’t pleasant as either I totally dehydrate myself before traveling OR drink as normal resulting in needing numerous toilet stops and the risk of having an accident if toilets can’t be found as I can’t hold the urge for long at all. So when I gave to go there is only a short window between needing to go and going! I can’t skip, trampoline or do anything vigorous without leaking so Tena Lady is my constant companion.
Myalgic Encephalomyelitis has turned my life upside down. I find concentrating difficult and so reading is difficult resulting in having to read and reread the same thing over and over. I have awful fatigue and cognitive issues along with never ending pain so am mostly housebound and rarely get out and if I do it comes with consequences. I have recently had a tooth extracted after prolonged attempts to save it with fillings and root canals, once extracted there seemed no cause for the pain it was giving me ~ apparently having ME and/or EDS can cause hypersensitivity. All I know is that now the tooth has gone the pain has gone too.
The Hypermobility EDS has only just been diagnosed and I am currently waiting for my referral to see a rheumatologist to come through. The knock on effect from this diagnosis is that I now know why I experienced past medical issues, it’s because my internal body as well external is affected. My biggest issue is constant and debilitating joint pain, making mobility exceptionally wearing, exhausting and difficult. I have also discovered that the gum recession is due to EDS too and so have made my dentist aware.
Question 3: How did you get a diagnosis?
My TMJ was diagnosed by both dentist and GP.
Depression by GP and mental health therapist.
Bladder and pelvic issues diagnosed by a Consultant in Gynaecology with special interest in pelvic floor surgery (prolapse), urogynaecology (female urinary incontinence) and menopause. He repaired a double prolapse for me and referred me for the pelvic floor/bladder electric shock therapy to try and help tone them to help relieve symptoms.
Myalgic Encephalomyelitis was eventually picked up after many years of being bounced from GP to GP who all said I was ill from stress and depression, yet year on year my health declined. It was only when a new GP joined the practice, reviewed my notes and said those magic three words to me when I told her I thought more was going on than stress and depression ~ those words were “I believe you”. She rang the ME Clinic to ask what she had to do before they would accept a referral to which they replied with a ream of blood tests to be taken to literally rule out everything that could be tested for. When all bloods came back as normal I was then accepted for referral to the ME Clinic at our local hospital. Once there I was given a initial (very long) thorough appointment going over my medical history and also incorporating a physical exam. My husband was with me as my cognitive function was so poor and I struggled to word find and construct sentences (my poor hubby had initially thought, and confided in the GP, that I had the onset of dementia). Using the Canadian Consensus criteria my official diagnosis was then given.
My Hypermobility EDS was also diagnosed by my ME clinic after more physical exams and thorough medical history which linked previously unrelated health events along with the pain to the specific Hypermobility EDS. It is now thought that my TMJ, double prolapse, bladder issues pelvic floor issues and diverticulitis/ongoing gut problems, poor healing and excessive bleeding, receding gums, plus easy bruising are all part and parcel of the EDS. I am waiting to see a rheumatologist for help gaining some control over the pain and to access specific physio and OT assistance too.
Question 4: How have your friends and family reacted to it?
I have few friends I see physically as most friendships are maintained over the internet.my close family aren’t surprised and it all ties together why I have been struggling. I am exceptionally blessed to have a insanely close, supportive and accepting family.
Question 5: How does being chronically ill make you feel?
The biggest response to being chronically ill is losing control. My body dictates what I can or cannot do each day. Some days I literally can’t do anything at all, I get hugely frustrated, sometimes tearful and other times angry.
Question 6: If you could have told yourself something when you first remember these symptoms arising what would you have said?
It’s not your fault! Sometimes things happen beyond your control and it doesn’t mean you deserve it somehow. Don’t beat yourself up, don’t try to force your way through it because all you are doing is making yourself worse. It will take time but you will be believed eventually. Life can still be fulfilling and rewarding, you will learn to see life from a completely different perspective, life won’t be the same but that’s not necessarily a bad thing.
Question 7: What was the biggest realisation you have had?
Asking for help isn’t a personal fail ~ I am stubborn and proud, I loathe having to accept defeat and asking for help. It used to make me feel weak, a failure, a burden. Now I realise that as a family we are a team and we all help each other, that it’s only human to need help sometimes. I live a more simple life, my expectations have changed and my life has become richer for it ~ something I didn’t expect. I now celebrate and revel in small achievements and the slower pace of life. Each “good day” health wise is grabbed with both hands and enjoyed. My outlook has altered considerably and I am far kinder to myself, our family has grown so close over the past few testing years instead of pushing us apart. Life can be a cruel bastard but not every day is a bad or sad one ~ it’s how you approach it that makes the difference.
Question 8: Where do you see yourself in 5 years time?
I have no clue, so much has happened over the past 5 years that could never have been anticipated, so I am pretty sure the next 5 will do the same. I prefer instead to live life simply day by day, trying not to look to far into the future. Whatever occurs will be dealt with as it presents itself.
Question 9: Have you ever tried any alternative therapies, if so what and did they work?
I have had acupuncture which helped a little but I found the treatments excruciatingly painful and I bruised where the needles were inserted, reflexology and herbal tinctures all to no avail. However I am trialling 8% CBD oil for pain and it’s working to some extent.
Question 10: What little things make your life easier?
Wearing splints helps support my joints and helps mobility.
I swapped a manual car for automatic which has made a massive difference and enables me to continue driving.
I also have a steering wheel cover which makes it thicker and therefore easier for me to grip when driving.
Hats! Essential for bad hair days, and dry shampoo, wet wipes, shower stool for easier personal hygiene.
Legging, jumpers, hoodies, trainers, my worn in DM’s make dressing and resting easier and more comfortable.
Walking stick/crutches help maintain my balance and mobility.
Blue Badge ~ means parking closer and less walking which in turn gives me more freedom.
Planning ahead ~ if going out then plan to rest before and after. If a big social event then book a hotel so I can go to bed whilst hubby can stay partying.
Talking to people so they know my limits beforehand, so if I have to leave or need to cancel they half expect it and don’t feel I have been rude.
Question 11: Why do you believe you have this illness, bad luck, a higher power or something else?
I initially felt angry, the why me, it’s not fair mentality but then realised that it is what it is. I still have a good life, it’s just different from how it used to be. I don’t think it’s bad luck or a higher power but just life. Everyone has demons to battle, it’s not always visible or apparent to others but I doubt many people get through life unscathed.
Question 12: Briefly explain to a healthy person what it is like to live with this/these illness/illnesses?
Being chronically ill with an invisible illness is difficult because it’s not apparent to others. It’s frustrating and sometimes humiliating trying to talk to people and explain what I have when these illnesses aren’t fully supported by many doctors and people assume I’m lazy or faking. It takes away many choices, your body and symptoms dictate what you can do and planning ahead is impossible ~ but if you do you end up cancelling more often than not on the day. Having people glare at me and make snide remarks when I park in a disabled bay ~ I now have “not all disabilities are visible” stickers in the front and back windows of my car. I miss so much especially long walks with my dogs and doing things with the family – everything is limited and life is a compromise.
Question 13: Has your physical illness had any effect on your mental health, explain?
I already have chronic depression which is always there, my black dog walking to heel mostly although physical set backs and flares can cause my black dog to break away and run amok. I am hugely emotional and feel great highs and deep lows but am learning year on year to accept, acknowledge and cope and know when it’s time to call in the cavalry when it’s too much to deal with on my own.
Day 14: Give 5 things you are grateful for?
My husband, daughters and dogs
Having a roof over my head
The internet for keeping me connected
My GP for saying “I believe you” and accessing help for me.
Question 15: What would you say to people newly diagnosed with this/these illness/illnesses?
Don’t allow yourself to be fobbed off, keep searching until you find a health practitioner who understands and supports you. Utilise the Facebook support groups, they have been a lifeline for me providing me with support, information and strong virtual friendships. Being part of a community whether a local support group or online has been a vital for me in feeling less alone. Also if a treatment that is prescribed for feel feels wrong for you don’t be afraid to refuse it. Research your options and learn as much as you can to stay informed about your illness. You are not alone!
Question 16: What is your favourite inspirational quote?
“Never be bullied into silence. Never allow yourself to be made a victim. Accept no one’s definition of your life; define yourself.” Harvey Fierstein
Question 17: How would things be different if you weren’t ill?
I would be more present in life.
Question 18: Do you think you have become a better person through being ill. Explain?
Yes, it’s made me sit back and appreciate all the small things that previously I took for granted. You can live a full life with a chronic illness, it’s just a different one to the one you imagined. People show their true worth and it has shown me who the genuine people are and those who are toxic. I now know far more about mental illnesses and chronic illnesses and have empathy for those who suffer. I think it has opened my eyes to a world previously unseen and made me appreciate life and the people around me more.
Question 19: How do you feel about the future?
I don’t look into the future, life has shown me that nothing is certain, instead I prefer to seize the day when I can and allow myself to do nothing when I need to. Tell those around me how I feel about them so that I never have to say I had regrets for not doing so. Life can end suddenly without warning ~ I intend to make the most of every second.
Question 20: Have you met anyone with the same illness. Did it help?
In therapy rehab groups and online yes, it helps to not feel alone and bounce ideas off each other. Also valuable life hacks and coping techniques are shared as well as friendship with people who understand and laughter.
Question 21: What networks or websites have you used for support or information about your illness/illnesses?
http://www.sane.org.uk/what_we_do/bdt (black dog tribe)
Plus closed Facebook groups have been a crucial lifeline
Question 22: How do you feel you have been treated by the medical system? Explain.
It has taken a long time to get diagnosed and to be properly heard, however, once diagnosed the people involved have been incredibly supportive and helpful. I think, sadly, it’s the luck of the draw as some people are not listened to at all. Awareness is needed about these conditions as there is so much conflicting information going on with many doctors not being up to speed on developments and research. There is still much to do and work of charities pushing biomedical research is necessary and fundraising essential to ensure these are still ongoing.
Question 23: What do you say to yourself when you need a pep talk?
It could be worse. Look around you, you have an amazing family and great dogs. It’s not about what you can’t do but what you can do ~ don’t give in to negativity.
Question 24: How have you managed to juggle your social life through your illness?
I don’t, my social life is timeout with family and very rare social get together outside of that. Going out in groups or socialising outside of my safety net takes huge amounts of energy both physically and mentally.
Question 25: Name 5 activities you have managed to pursue while being ill and 5 activities you have done that you wouldn’t have pursued if you hadn’t become ill?
I can only think of two which just happen to fit in both categories;
Photography ~ I signed up to a Open University photography course and passed despite rarely leaving the house. I mostly utilised items inside the home and in the garden to fulfil my assignments. I wouldn’t have had the time to pursue this hobby if not been ill although it’s only possible to do on good days.
Joined online groups to socialise, before becoming ill I would socialise in the real world but I find I sometimes need to step back as interacting even virtually can become overwhelming.
Question 26: What impact had this had on your friends, family, partner etc.?
We have become more reclusive but my husband can and does, without any animosity on either side, go out socialising alone. Our family has become so much closer throughout our difficulties and laughter is a huge part of our life. They know where I am and that I am limited but it doesn’t have a negative impact as such because we all tend to look on the bright side and not dwell on the bad stuff too much. Although now and then it needs facing and discussing as events or need arises.
Question 27: What’s the most helpful advice you have had?
That it’s not my fault, I’m not alone in this and to listen to my body and follow my gut instinct. It’s okay to say no to treatments that don’t sit well with me, what works for one person may not work for another. To research my conditions as much as possible so that I am aware of any new breakthroughs or treatment advice, ironically I end up (as do many sufferers) educating health care professionals who don’t know what my conditions are.
Question 28: Name 5 things you have achieved despite your illness?
Passing my photography Open University course.
Being active, although in a different way, in my family life, supporting my husband and children in whatever ways I can.
Socialising and meeting people, all be it virtually.
Blogging ~ a form of therapy and a way to connect.
My sense of humour, I may get knocked down but I’ll always fight to get back up again ~ humour makes life easier to face and deal with.
Question 29: What has helped you cope with the stress of this lifestyle?
The support, love and understanding of my nearest and dearest. They put up with my mishaps due to cognitive dysfunction, keep me laughing, keep my life in perspective. Also my dogs, never underestimate the power of pet therapy. Also, very importantly, finally accepting myself, acknowledging who I am and learning to love that person. Letting the negative people go without stressing about it and not worrying if people don’t like me.
Question 30: And finally…starting at your toes and working up to your head, name each part of your body and how your illness has affected it, followed by something you like about that part of your body?
Oh blimey..That would fill a book, instead I tell you that all my body is affected by my conditions, internally and externally. I suffer aches, pains, swellings, bruising, infections, slow healing, excessive bleeding, bladder issues, no pelvic floor support, gut and bowel issues, skin irritations and allergies, dental issues, cognitive dysfunction, mobility issues and more ~ YET I still love my body, it’s baggy saggy parts, the scars and stretch marks, the swollen and bruised parts and my batty old brain because without them I wouldn’t be here and they carry with them my life story.