Social Life Vs Social Media

Recently I scanned through social media and read people’s posts about their long lists of achievements and I was left with the feeling that I had nothing to be proud of and nothing valuable to share.

If I haven’t just made the best cake, gone on the best holiday, won an award for something or ran a personal best than I had nothing to contribute to the world and people would just find me boring… it started to feel like if you are chronically ill than you have nothing to be proud of or to share with the world.

You are useless and very uninteresting… and you most definitely can’t be fun. The more unwell you are it seems as though the less you are interesting or relevant.

Have we really come to this? Is it a competition now to see who has the most interesting personal lives? … I wonder.

After deciding to take some time away from social media I started to feel as though my life was worthy again and that I am in fact an interesting human being; no matter what my health status and my challenges. I started to find my smile again, even in the middle of pain and struggle.

I also noticed that the less you share of your life the less that people feel entitled to make judgement on it or critique you.

It has left me with the very real question of what do I share and what really matters?

I have noticed that my long time friends and the people who reallyknow me have always encouraged me and always valued me, no matter what I was doing or how well I am.

Those that don’t really know me, love me or respect me (or my life) are more likely to take exception, be judgmental, critique me and my choices and don’t really care about what matters to me… They are friends, family and acquaintances in name only.

I have loved my time away from social media and the stream of information, comments and some of the events that have very little to do with me or my quality of life. I.e. Knowing that people are eating laundry liquid or what the current trends are!

I have started to appreciate the little things in my life once again and they have a renewed sense of purpose and peace about them that can not be quantified or compared with other people’s day to day lives.

As I get older I am learning what really matters to me and who really cares. Although I am learning that there are a lot less of both, I feel the richer and wiser for discovering them.

I think a health challenge, or life changing event like that, makes you mature very quickly! It gives you a lot of lessons in a short period of time, and this can make us feel very different from our peers and even those who may be older than us in years. Does all this knowledge have a value? I absolutely believe it does!

Even if it only has value to me.

I will always treasure the love, kindness, encouragement and lessons from those people in my life and those that are no longer in my life. I acknowledge that my life and future is very different from many others out there, but I now also feel it has very real value and I will always be happy and blessed to be able to share my life and love with those who value it too.

Gentle hugs,

Trish.

A New Plan.

This year I have devised a new plan with my husband. I have been developing this idea for weeks now and it is taking form now in my mind. I want to try a change of tactic this year – as it is now a decade since illness overran my life and changed us forever.

I guess this the ten year anniversary for it all.

I had decided I want to try and economize on doctors/specialists appointments (unless there is something critically wrong or changed) and I would like to have all the specialists in one area/hospital and visit some of them on the same day, yet sparingly.

I intend to cut back on any unnecessary medications or meds that I am not sure if they are making a real difference or not.

I plan to slowly wean myself of some of them and see if it makes any real change to my general health, and if it doesn’t then I intend to slowly stop them entirely.

# Before I get comments about this … yes I have indeed shared this with my GP. We informed her on Friday.

I simply don’t want this year, or the next ten years, to be more med trials. More pain and side effects. More questions and no real answers. More merry go round. I do not intend to spend the rest of my life pinballing between doctors, tests, scans and specialists… so my plan is to self manage even more!

I think I have seen and experienced most of the scariest and most painful things by now. I don’t believe it gets more scarier than not seeing, not being able to balance, not breathing easily, not feeling your limbs and feeling like your bowel will explode!

I am pretty shock proof these days … And so is my husband.

I have accepted that I must live with a lot of pain and struggle for the rest of my life and that was probably the hardest conclusion of all to reach.

You see I have been trying to lessen these burdens over the past ten years, but no matter what I do I can’t seem to live without pain and a mass of other issues and symptoms anymore. I just have to accept this.

so now I want to focus my attentions on my husband, my furries and other interests for awhile. Focus on giving them more of my life when I can.

With everyone in my life we have settled into a state of ‘it they don’t ask then I don’t tell’.

People seem far more preoccupied in their own lives these days and I now have whole conversations devoted entirely to others. This is generally how all my conversations are now and I have become very used to it. I have become strangely comfortable about it now.

I have retreated from a lot of the online groups where I tried to spend time in and support others… a lot of my energy has been spent by over committing myself to all these groups and leaving me very tired and unable to do anything else.

I am at a point where I no longer care what the world thinks I should be doing. I am nearing a peace with who I am now. I no longer belong to the world of the busy, able bodied, go getters and regular people… and I am starting to feel ok with that now.

I know some will read this and find it strange or some might feel I am giving up. They will form their own opinions but ultimately it’s me who has to be happy with the life that I will have, not others.

For a long time now I have been desperately looking for ways and drugs that will allow me to re-enter everyone’s world. To fit in with themagain. To be what I was again… I realize now that this is what I must stop doing.

Because this life requires that I devote my time managing my life and my challenges … and yet still try to take opportunities to enjoy some of what life has to offer; if and when I can.

This means I can’t be trying to fulfill others expectations of me or keep trying to be the person that I was. Not now. And perhaps never again.

To our credit, for all these years we have asked very little of others and have not expected help from anyone that didn’t offer it freely. This means that we have been on our own now for a decade. The only people who have assisted us are those we pay to do so.

We should give ourselves full credit for coping all these years… More credit than we do anyway.

Over these past years we have changed our lives entirely. I no longer have a career, my husband had to retire to be my full time carer, and we have made many changes and modifications to our lives (and home) so that they are almost unrecognizable compared to what they were. We are unrecognizable now. Our character and personalities have changed dramatically too.

It seems strange to me how most able bodied people assume that the chronically ill and disabled are burdensome and an annoyance. Always complaining and embarrassing. This is nothing like the reality we have witnessed time and time again. With very few exceptions, most chronically ill and disabled are the ones who are silent. They are the ones not complaining about the minor annoyances of life. They are the ones who keep their pain and their challenges to themselves, despite the daily struggles just to survive… All the while showing a brave and unfaltering face to the world. Unlike many others out there with fully functioning bodies and lives.

It is this resilient and unrelenting spirit that makes the chronically ill and disabled some of the most remarkable people in this world. More remarkable than those that dominate the media and the social landscape.

I have committed 100% to this new plan and I am hoping that there will be some peace and different opportunities inside it. Although there may potentially be more hurdles ahead, I feel a sense of assurance knowing that, once again, I am willing to try anything and everything in order to enjoy this one life I have to live.

Gentle hugs,

Trish

Bad Medicine

I am certainly not new to the world of doctors and specialists, but even I am stunned when I encounter a rude and uncaring doctor! It’s completely and truly deplorable!

We feel so exposed and so vulnerable when we see a doctor or specialist. Our pain, our hurt, our struggles and our fears are exposed to a stranger, and when they are rude, disinterested, don’t listen, criticize, talk over you and don’t answer your questions it is truly inexcusable.

I thought by now I was beyond such experiences. I was wrong!

I have found it very hard to have to constantly explain all that happens with my body on a month to month basis. Sometimes I may struggle with bowel issues. Sometimes face rash. Sometimes joint pain (red, hot, stiff and painful), sometimes spasticity in my arms and legs and sometimes all of them at once… and more….

It usually means that several different Autoimmune illnesses are happening at once and there may also be overlaps. However when you encounter specialists who are only concerned about their area and refuse to see the whole picture (and how much you struggle with them) then it is time to walk away… (forgive the pun).

I am doing my utmost to recover from the incident which I experienced recently, and I have to believe that I can find a far better behaved doctor to take her place, but the emotions are still raw.

At a time when I am struggling so hard to stay active and do anything this person made me feel completely worthless.

I really must remember to never give anyone that power. Anyone.

I have also come away from this recent experience asking myself why did I put up with it? Why didn’t I speak up??

I should have… and I didn’t.

Perhaps that is really what is causing me such frustration and emotion, the fact that I am this age and I didn’t stand up for myself better in front of this poorly behaved and unprofessional person.

I simply said nothing and told her I wanted to go. I barely spoke. I just sat and took it all. I am deeply disappointed in myself and I must learn not to let myself down like that again.

Going forward I want to take lessons with me. I want to do my homework and be better armed against such a person in the future; should I ever encounter someone like that again… especially when they say things I believe to be untrue about things I am uniquely familiar with i.e. My body.

I want to be a better advocate for myself even when I am in the presence of the worst care providers.

I have been on discussion boards where people have said thing like “he is the most arrogant doctor” or “she didn’t listen and just left me in pain” and it still shocks me and disappoints me.

Why would anyone treat another human being like that? Especially ones that took an oath to act in behalf of their patients and to do no harm (physically or emotionally)!

Truth is that Bad medicine and bad doctors are everywhere, and in the places you least expect them. We can never become complacent and somehow we must find the courage and strength to stand up for ourselves.

After all, these people won’t ever think of you again or have to live with the consequences of their behavior… but we do.

Gentle hugs,

Trish

The Night Before

Even a decade later I still worry before going to see a specialist the next day! Why? Even after all this time I am never sure of whether it will be a productive visit or not. I can never be certain.

I must also admit that the challenges I face to even get to the doctors office are also a huge factor to my unrest. The pain and difficulty to get there, the waiting and then finally to sit and list all the issues that have been worsening over time is also hard to look forward to. I often wonder do others feel the same?

Why do I bother? Blind hope. Hope that something might be suggested or offered to make life a little more bearable. The eternal hope of all Autoimmunes.

I have been constantly informing my doctor of things that have happened or increased via telephone and email but she always insists that I come see her, no matter how much of a physical challenge that is for me. It doesn’t really make any impression on her or change her requirements.

Skype? My previous doctor agreed to Skype consultations but my new doctor does not. Why? I don’t know. It’s just her policy. Perhaps the regulations and payments have changed so she can not charge the same amount. I don’t know. As patients we are never told why regulations or policies change or are even considered in the decision process. Governments and doctors will decide what they wish. It feels so ridiculous. I am a tax payer but I have no real say in my care on many levels.

So… it’s painkillers and sheer will power to get to her office. She won’t even alter her practice hours to include afternoon consultations for her patients; although I barely sleep for more than several hours each night and struggle to get ready inside two hours each morning.

It usually means I don’t go to see her often, despite the pain or disability I have. I just can’t meet her expectations and requirements.

Am I important? Are my needs important? I can’t help but wonder sometimes. I have been seriously considering reducing my visits even further.

Tomorrow I will have to tell her again that I could not cope with the latest biologic I was prescribed. It will be my third. I feel quite saddened by this and there is a growing sense of hopelessness inside me. I try not to give way to it but it’s hard. Will she suggest another? Have I run out of options? Has my increased pain and symptoms mean that I am no longer responding to any of the drugs I have been taking all this time? Have they become ineffective? It has happened to so many other fellow sufferers, perhaps it is happening to me now…What next?

I must admit that my greatest fear of all is that the growing pain and difficulties will only worsen and I am powerless to do anything about it. That she has no options left for me.

My quality of life has worsened dramatically over the past years and so I can not think beyond day by day management. The thought that I will be left with this level of pain forever is more than I can emotionally cope with. So I don’t think about it. I can’t let myself.

The result of several Autoimmune diseases has been worse than I could imagine and more than I can now explain to each doctor; and each doctor never sees the whole picture and will only focus on their own particular interest, regardless of how it all effects each other.

I feel trapped. An autoimmune Catch 22.

What next? I don’t know … that is really the hardest part about the night before a visit for me. The unknown.

Perhaps others can relate?

Gentle hugs,

Trish.

Support Groups

I recently read a post from a lady who obviously had felt very disappointed and saddened by the lack of understanding and the cold / rude comments made on her post. I felt so sorry and disappointed for her.

She went on to say that support groups are becoming not very supportive. I am sad to say that has become so true in many cases. There is a growing number of incidences where people can be cold, cruel, competitive and nasty to fellow sufferers. It doesn’t make sense to me.

Although I realize we are all different and have different opinions about illnesses, treatments, medications, relationships, symptoms, diets etc, surely that doesn’t mean we can’t express these opinions in a respectful manner?!

The fact is that many people come to support groups for just that reason… support, but can be saddened and terribly hurt when it becomes a place of judgement and rejection.

Sometimes it takes many different attempts and many different groups to find one that is a good fit. Sometimes it can take years of looking and getting a feel for each group. It doesn’t usually take long before you will know if it is the right group for you.

After many years in groups I believe I have developed a sense for where I feel comfortable and able to fit in. I am also the type of person that if I read a post that I don’t agree with or don’t understand, I simply keep scrolling down and skip over anything that I don’t wish to read or comment on. It would be a good idea to consider this before commenting on something that you are not sure how it will affect the person writing. I never write anything I wouldn’t want said to me or in a tone that I would want said to me.

No matter what our differences, there is no reason to be cruel and hurtful. Ever.

I have also found that after all these years I try to spend less time in groups and balance my precious time with other things not related to my pain, illness and suffering. Balance is key for me. Too much time spent in support groups can leave me feeling drained and morose.

In short, I have had some wonderful experiences, met some amazing people and valued from the learning and experiences of those far more knowledgeable than me. In some cases it has meant the world just to know I am not alone in my struggles, and that there are millions of people out there feeling, battling and coping with similar challenges as me. It gives me a great deal of comfort and hope.

However people are still people, no matter if they are sick or healthy, and we can encounter some very difficult personalities. When it comes to each support group we must ultimately ask ourselves is this a valuable tool, or is it a burden?

Thankfully there are so many groups out there for every possible disease that you will not be limited by options and possibilities.

I hope you will ultimately find the right group and the right balance for you!

Gentle hugs

Trish

Fighting The Feeling

There are many times over the years that I will battle the darkest enemy of all. Harder than the pain and disability combined is the feeling of uselessness; Complete and utter uselessness.

Laying here people might assume that this is not a bad life. Some misguided souls might even think sitting or laying around the house is their idea of heaven. It isn’t. Not for me anyway. I hate it.

When you reach a point in your health where all you can manage is to bath yourself, eat and maybe go online, it is truly soul destroying. Especially when most people in the world can do far more than this.

I fight the feelings of uselessness harder than I fight the waves of pain. Much harder. It will bring me to tears faster and longer than any physical pain I have ever known… Emotional pain can be so much harder to bare.

I guess that is why so many people drink, take drugs, smoke, gamble, exercise, shop and do other activities to control their inner demons and distract themselves. I think addictions can come from a place of sheer frustration and emotional pain. No one wants to feel this much emotional pain constantly.

Years ago, whenever I felt worried, anxious or stressed my mother would always say go do something. Keep busy! I am sure it was valuable advice. A bit harder to do now, given my current circumstances. But her words ring loud and strong even now.

In the year leading up to her final cancer battle she struggled to do much at all herself, although at the time I didn’t see this as I hurried around in my roles and career, I am sure she began to struggle with that advice herself.

I see so many things different now.

Doing something is definitely a gift. Physical abilities are a blessing that so many take for granted and are quick to dismiss or judge. Being able to do nothing is some of the hardest things in the world to do.

Years ago the list of things I could do and my abilities far outweighed the things I couldn’t do. Now the opposite is true. It’s cruel.

I find it particularly painful when people and even doctors keep suggesting to make sure you remain as physical as possible. Does it never occur to them that we are?!?! They seem to not have the slightest idea of what they are talking about. I guess they don’t. As far as medicine and Autoimmune diseases are concerned we may as well be living in the dark ages with witch doctors and leeches.

Uselessness.

It is hard to watch my husband do something without instinctively wanting to be involved and help. It’s automatic. Even after all these years.

I willingly inflict further pain and suffering on myself just so I can do something. Anything. No matter how small. Like writing this post.

Living apart from the rest of the world and isolated like this makes it slightly easier to live with disabilities as I don’t have to see so many others doing things effortlessly and I don’t feel so odd within my own limitations. I don’t feel as useless.

Although everyday tasks still serve to remind me how much things have changed. I try to block it out. I try to not feel it. Not dwell on the uselessness.

Can it get worse? Yes. Will it get worse? I don’t know.

So I am doing my best to further develop better coping skills for these feelings. These terrible heavy feelings. These desperately hopeless and painful feelings of uselessness.

I keep trying.

Gentle hugs,

Trish.

Celebrating

Today we made plans to go for a visit to the beach for New Years Day. The weather is amazing. The beach is so close by. But we didn’t go.

Another plan that hasn’t gone to plan!

A common occurrence for the Autoimmune and chronically ill. So very common that it is almost unremarkable.

Why didn’t it happen?

For some time now I have been struggling with back, hip, feet and nerve pain. Probably close to 5 months at this painful level. Very little sleep. Barely able to walk/move. Feeling like hot spikes are driven into my joints and feet. Tossing and turning to try and find a position that allows a few moments to sleep all night is exhausting. It has become the normal for me for awhile now, on top of every other challenge.

And then on New Years Eve I fell when I could not feel or control my leg. A relatively small fall compared to my others, but enough to send me more pain. And then spasticity overnight and my body feels like it is being pulled tight like a overwound guitar string…

… so today no beach.

What is the lesson at the bottom of these painful places? What can I take away from this? I search for meaning constantly.

Well… I realized today, as I sit nursing my bruises and pains, that I no longer have the luxury of planning. It is more like keen hoping. The more I plan the more it can seem like a mirage.

If I get hung up on being able to do things on designated days like birthdays or NewYear’sDay than I will always set myself up for emotional pain and disappointment.

If I take the wishful hoping approach and then if it all goes according to plan than I can feel a unique sense of achievement!

I have begun to realize there really isn’t one day for celebrating and that celebrating can only happen on those days. Birthdays can be celebrated days, even weeks later. As long as the love and feelings are there.

The beach will be there another day too. And I will try to take in every moment with joy.

Unlike the rest of the world I cannot plan with these diseases, I must give way to them. Although I will never like it. They have the final say and I must patiently wait for when I can do what I would like to do.

I will celebrate and enjoy … just maybe not when the rest of the world can and will.

That’s why I am especially grateful for those who understand and who will celebrate with me when I can. They are also showing as much patience and strength as me. They are truly remarkable.

As I shared this revelation with hubby I also told him that I would do my best to truly accept this on every level.

And I will do my best.

I will do my best to not get hung up on certain days and certain events. I will do my best.

I will do my best to seize the chances and enjoy whatever events when I can. When I am able. Even if they are few and far between.

In time I hope that this will become habit and become normal. With time, and with the right people around, hopefully there will be special days again.

Gentle hugs,

Trish