Rainbows and Unicorns

I am going to let you in on a secret, I don’t shit rainbows or unicorns. Nor do I manage to spend everyday with a grin plastered on my face. Life with chronic illness is not something I tend to smile about and yet again it seems the old disability porn meme is doing the rounds on Facebook. The one that says “the only disability in life is a negative attitude”. I would love just one of these idiot posters to spend 24 hours living my life and see how positive they feel.

I have been staring into the abyss for a while now, for a few months I have been trying to kid myself that my mood would get better, that I would indeed get a good nights sleep and things would improve. I have practiced every self-help technique I have ever been taught but currently I seem to teeter between a feeling of raging premenstrual syndrome (ANGRY RACH!) or sadness, the kind that makes your heart ache. I would love to be melodramatic and say I have spent days in tears, I haven’t, I don’t have the energy for it. I did have a couple of days of easy tear shedding a few weeks ago when hubby was on holiday and that was only after I confessed to how bad mentally I was feeling.

I have written about my battles with depression before, I had smugly thought that I had won and I would never end up back there. How wrong I was. Since August I have faced a battery of testing, a muppet of a consultant (the one that told me I was spending too much time on the internet looking up syndromes to have) and a new diagnosis to add to my ever-growing collection of the ones I already own. It’s funny how the diagnosis or a new diagnosis can send you closer to the edge than you’ve been in a while. 

The absolute icing on the turd cake that is my life, was finding out that my driving licence had been revoked due to the diagnosis of Meniere’s disease. Despite the fact I get several hours notice of the attacks because they aren’t under control I am deemed no longer safe to drive. It grinds my gears (pun intended) that I know that there are many people out there driving who haven’t informed the proper authorities of their medical conditions. I know the DVLA are very hot on vertigo / blackouts now due to the terrible tragedy last year in Glasgow, where a refuse lorry driver crashed into pedestrians killing six (more info here). I understand why I am not allowed to drive, it doesn’t mean I have to like it.

Lack of sleep has also had a detrimental effect on my mental health. I haven’t slept properly since 2011 when hubby had his accident ( a drunk driver hit him, when he was on his way to take the dogs out). The crash also left me with a lot of anxiety whenever he has to drive anywhere alone, oddly enough his journey to work doesn’t bother me, just everything else. I am a bag of nerves whenever he leaves the house and make him ring me when he arrives at his destination. 

Pain has also been a major cause of lack of sleep, I tend to get breakthrough pain because I don’t move around very much whilst asleep (as in changing positions). Up until recently I was lucky if I got 4 hours at a stretch most nights, once every few weeks I would sleep 10-14 hours and end up feeling worse than after a 4 hours sleep. Not sleeping drags you down, it is terribly lonely being the only person awake for hours on end. Waking up at 3am means it is a very long day and there is no evening for me as I am back in bed by 7pm and most nights asleep by 8pm. 

All these things combined meant that no matter how hard I tried I just couldn’t lift my mood. I am a consummate actress around friends and family, no one would really know how bad I felt inside because for the short time I spent with them I could pull off my usual wise cracking self. If anyone suspected I wasn’t my usual chirpy self it could be passed off as feeling rough or being in pain. However I knew things were getting bad when I no longer really wanted to talk to anyone outside of my family. I have a habit of withdrawing deep inside my head when things are tough. I don’t make an effort to socialise because I can’t be bothered to pretend that everything is ok. I put off visits from friends and basically become pretty shoddy at staying in contact with people. Even with hubby I start to get very quiet, mostly because I don’t want to snap at him because the issue isn’t him its me. In the grand scheme of things what does it matter if certain jobs haven’t been done by my self-imposed deadlines? I become frightened to speak as I may give myself away. I hate feeling like a burden to people. Over the last few months I have felt more and more that I couldn’t ask for help until one day I couldn’t suppress it any longer.

When you have lived with depression, you learn the danger signs. They can be very subtle and can take you a little while to pick up on them but they are there. Mine started with getting less and less sleep, then the feeling of sadness crept in, one that wouldn’t go away. Then I start spending money to cheer myself up. It is usually gifts for others as if I alone am not enough to please them. Then the self loathing starts with a vengeance, I start feeling like I am a failure because I have put on weight (comfort eating and wacky hormones), ugly because of the new facial hair that has sprouted and the teenage skin I suddenly acquired. A failure in so many ways that my inner voice of criticism literally doesn’t shut up from the minute I wake until the minute I go to sleep. It is a lonely place inside my head and it seems so stupid to retreat there but then that’s depression for you.

Thankfully I have identified the signs early, probably the earliest I have ever done so. I would class myself as mildly depressed, there are no thoughts of suicide or self harm but eventually they would have surfaced if I had let it go on much longer. I have visited my gp, who I think would have guessed this was coming as on the last two telephone conversations with him I have ended up in tears. He has placed me on an antidepressant that is known for its sleep inducing qualities. I have only been on it a few days but I am already experiencing better quality sleep, the kind where you wake up and feel like you have slept. My mood has lifted a little, which could have been caused by sleeping better as the medication isn’t supposed to reach its full effect for 7-14 days. My gp did say to me he felt with a few decent nights sleep it would take the edge off and it has. When you haven’t had a refreshing night’s sleep in 4 years you forget what it’s like. I have been waking up in the morning and not feeling groggy. I can’t remember the last time I felt like that on waking.

I have to go back and see the gp in a couple of weeks, a basic check to see how I am feeling and if the medication is working. I have been told to ring him immediately if things aren’t going well. Things are ok, is all I can say at the moment. I am hoping in a few weeks I will be able to say things are good.

It’s very difficult when you have a chronic illness to be able to address depression by the normal self-help means diet and exercise. Mobility issues and pain mean all but the gentlest of exercise is completely out for me. My diet is very restricted and when you feel depressed you can end up bingeing on junk food in an attempt to make yourself feel better for the short amount of time you are eating it. At the moment I am not feeling like eating (probably the new medication) nothing makes me think “oh I fancy eating that”. I am still hungry but the desire to eat has gone, which for me is good as I don’t want to end up bingeing all the time. I have to eat three times a day due to the Betahistine so I force myself to eat then. The pleasure of eating has temporarily gone and I am ok with that.

One of the main reasons I shied away from asking for help from my gp was the stigma I have faced in the past with having mental health issues on my medical records. Too many doctors when I was struggling for a diagnosis saw the issues from ten years earlier and decided that my illness was psychological and not physiological. I didn’t want that happening all over again however there came a point where I realised I couldn’t keep trying to soldier on. Nothing was going to change unless I got help. 

So I urge those of you who are struggling right now to ask for help, there is no shame in saying you need assistance. Chronic illness is a lonely world to inhabit, many of the things that get me down can’t be changed but I can learn to adapt to a new normal.

Unsolicited Medical Advice

Things have been hectic here both in my personal life and health wise this week so I haven’t been able to put together a blog post this week. So I have decided to re-post this one from a year ago.

Good news though – for those of you who don’t follow  my page on facebook, my MRI scan came back.

        ***Sarcasm alert***

Nothing is guaranteed to get me raging more than unsolicited medical advice. I can be calm and happy one moment yet once I am on the receiving end of someones latest theory on what will get me well, I can be incandescent with rage in around 60 seconds. It’s not the sentiment of the bearer that I question, it’s the very little knowledge of my condition that they possess that irritates me.

Unsolicited medical advice is just that unsolicited. Unless I have asked a direct question regarding your opinion on or suggestions on what would make me feel better or would cure my condition then just don’t. I know myself in the past I have offered up to others what I have considered to be pearls of wisdom without them asking for it. However now having had some time being on the receiving end of countless suggestions all of which were unsolicited I can tell you it’s infuriating. Now I refrain from doing it because I know that it is not at all helpful. Sending me links to new medical papers on research into my condition is not the same as unsolicited medical advice. That is very helpful and greatly appreciated.

Over the last 7 1/2 years I have all sorts of helpful suggestions, from being told that I was being punished for a sin in my past life and needed to pray harder to gain recovery or to being told to eliminate stress from my life. Eliminating stress from any ones life is good thing however it’s not really been shown to be a cure for any illness that I am aware of. I have been informed that removing the artificial sweetener aspartame from my diet would be the magic bullet, I had several emails about that one when it was doing the rounds. I have been told that I just needed to get outside and exercise. That one hurt me quite considerably as out of all the things I can no longer do walking my dogs is the one I miss most. Anyone who suggested that one clearly doesn’t understand my illness or the sense of loss I feel about being no longer able to do so many things.

We all in our lives have provided unsolicited medical advice to someone be it a partner, a family member or a friend and when we have given them this advice we have done it from a place of love. We give them this advice because we truly want to help them feel better and get rid of whatever illness is ailing them. It is not done to hurt them or to make them feel bad about themselves. I try to remember the sentiment behind the persons advice when it is issued. Sometimes it is really hard though because issuing advice for a cold is a world away from issuing advice about a long-term medical condition. 

People with long-term medical conditions usually have more knowledge about their conditions than a lot of the medical personnel that they will come into contact with. Those with long-term medical conditions know how to manage their condition what medications work and what doesn’t. So what irks me is when someone who has zero knowledge of your medical condition decides that because they have read, seen or heard  a nugget of information that they are able to tell you what to do to get better. A situation that has long eluded the medical profession.

A piece of advice that tipped me over the edge recently was received from someone who should have known better. A few weeks ago my phone beeped to let me know I was in receipt of a text message. I had a look at the message and just growled. It was from a friend who works within the medical profession who had sent me a link to a page on BBC News website. Without even checking the link I text back “Please tell me this isn’t about the girl who went Vegan and magically cured her PoTS?” I knew it was without even looking, as this “story” had been doing the rounds on various forums, where there were several Vegans and no, they hadn’t been cured despite their dietary choices. What we had learnt on the forums was that said person who cured her medical condition, fell into the age group where you can grow out of PoTS and she also had a cookbook being published so hence the flurry of unhelpful newspaper articles about turning Vegan as the cure for PoTS. My text message received a rather sniffy response, the tone of which made me feel like because I hadn’t decided to become a Vegan immediately then I really must not want to get well.

There were a lot of things about this text conversation that annoyed me. Some weeks previously I had informed this person I had been diagnosed with spinal arthritis and received no response. As this person was now moving into the outer orbit of our both mine and hubby lives I didn’t take offence. Sometimes friendships change and that’s the way of life. Secondly this person works within the medical profession in a highly paid and highly responsible job. Thirdly this person has known me for nearly 20 years and in all that time I have been vegetarian, they know this. I know vegetarian is not vegan – I have been vegan in the past for about 6-10 months. Finally, this person is supposed to be a person of science, as good as a balanced vegan diet is for you where is the medical evidence to back this woman’s claims up? I didn’t argue I just ended the conversation pointing out that I didn’t just have PoTS anymore that I had in fact been diagnosed with severe autonomic nervous system dysfunction and did they have any dietary suggestions for that one? Funnily enough I haven’t heard from them since.

I don’t know what made me angrier the suggestion that becoming a vegan would cure me or that when I rejected the advice I was made to feel like I wasn’t doing everything in my power to get well. It’s not the first time that I have been “accused” of not wanting to get better, when I have rejected someones advice. That’s why when I receive messages / emails or have conversations with people when they offer advice I try to smile and say thank you rather than get angry about it. However due to this person’s medical background I felt extraordinarily let down by the fact they had even sent me the link without first checking out its scientific validity.

Again I don’t doubt this persons sentiment was anything other than provide me with some advice that he or she felt would help set me on the road to recovery. It is just  on that Sunday morning I wasn’t able to see that and responded as I would have done 7 1/2 years ago. I learnt through trial and error when people were offering me advice it was better to smile and nod rather than to dismiss their advice out of hand as hard as that maybe. 

So having sometime this week to think about all the unsolicited medical advice I have received over the years I thought I would share some with you;

1. Pray harder / more / start  praying – this one is always a little difficult for me as I hold no religious beliefs. It is also quite insulting when you think about children who have life limiting illnesses would you honestly impart this advice to the parents or imply that their lack of praying is the reason why their child is sick? It just seems a little insensitive and a person’s religious beliefs are private between them and their God.

2. Eliminate stress / take up meditation Everyone wishes that they could eliminate stress from their lives, no one has ever said “please give me more stress”. So when this little pearl of wisdom is thrown my way I do have a little chuckle to myself. Stress is all around us its part of the modern condition. There are things that you can do to reduce your stress. I like my morning Pilate’s session that is done in complete silence as I can not think about anything but the exercises I am performing. It does quieten down my mind I can’t argue with that however it is yet to cure my medical conditions.

3. You need to get out more – I can’t argue getting out of the house lifts my spirits and makes me feel part of the human race. However getting out of the house will also land me in bed for several days just due to the over stimulation of my senses and the physical energy required to keep myself propped up in my wheelchair. When I can, I take a short drive with my husband for a change of scenery and some fresh air whilst he walks the dogs. What people don’t realise is to achieve those 30 minutes out of the house I have to rest all afternoon. I wonder what illness getting out more is known to cure?

4. Get some exercise, you feel ill because you’ve let yourself get so deconditioned – ha ha ha ha ha! OK I will admit taking up Pilate’s has helped me loads in the last 6 weeks. However the type of exercise that the people who suggest this to me mean is going out for a brisk walk along the seafront etc they do not mean lying on the floor for 20 minutes performing Pilate’s.

5. If you lost weight you would feel better about yourself – I have no argument with this one. Being a healthy BMI is better for you ( and yes I am fully aware of the arguments surrounding the fact that the BMI measurement needs updating as it’s not completely accurate), its kinder to your joints and if you are overweight losing weight can make you feel fab. However when it is said to someone who has gained weight as a side effect of medication that they can’t stop taking it’s not at all helpful. I wonder if you had a friend who was overweight but healthy you would have the cojones to suggest that? Feeling better about myself suggests that the person believes that my condition is psychological and not physiological which is not the case.

6. Change your diet eat Paleo, Fodmap, vegan, gluten free, raw food, clean food etc etc etc – I can’t argue with the fact that many people with EDS and PoTS have had great results in reducing their gastrointestinal symptoms when they have changed their diet. People with autoimmune diseases such as Myasthenia Gravis are encouraged to go gluten-free to help manage their condition. Diet does play a much bigger role in the body than current medical thinking appreciates. I believe as long as you are eating a balanced diet as free from convenience foods as you can you are doing a great job. I have tried going gluten-free it made absolutely no difference. As I can’t digest raw vegetables or fruit with horrific stomach pain I will not be trying the raw food diet again. I have been thinking about going vegan for a while now for ethical reasons not health reasons but I am currently too sick to do anything about it. I do say do whatever you can manage diet wise but do not become a diet zealot / bore! However don’t suggest things to me that I have already tried!

7. You need to adopt a more positive mental attitude – My only answer to that one begins with F and ends with F. Moving on!

8. You need to take up a hobby –  Oh OK so because you don’t understand the world of blogging you are automatically assuming that it’s not worthwhile? See above for remainder of response.

9.Have you tried X,Y,Z herbal supplement – I am not against herbal medicine that has a proven track record (or large amounts of anecdotal evidence ) such as evening primrose oil for PMS or Black Cohosh for the menopause. I use peppermint tea whenever my stomach is playing up (pain or wind) as I know it works for me and many people on the forums I am part of use liquorice to boost their blood pressure. What I am referring too are the people who know zero about your condition but insist that a friend of a friends uncles, aunties , sister cured themselves of a, b, c, by taking this supplement. Why they think you have the same as their friend of a friends uncles, aunties sister is beyond me as if you ask them to name your own medical condition they wouldn’t have a clue. 

10. You are paying for the sins of a past life and need to be forgiven- I saved this one until last as it is a personal favourite of mine. If indeed I am paying for the sins of a past life what am I supposed to do about it? It also brings the question to mind what makes the bearer of this news so special that they aren’t being punished? I could go into a whole anti religious rant but I am respectful of other people’s beliefs I just wish they could be respectful of mine.

I have probably had quite a few more than I can currently remember that they are the ones that stick in my mind. I am sure over the years to come I shall be in receipt of many more!